FINAL 2008 Annual Report.pub - Prader-Willi Syndrome Association

Annual Report — 2008

Thanks and Praise... 

“You folks are nothing short of amazing. Thank you so much for your 

support. I am so glad I made the initial call to the PWSA crisis 

intervention program. It was a hard thing to do but you made it so easy 

for me.” 

“Thank you for all you have done for us. Keep up the good and much 

needed work.” 

“I wanted to thank you for the helpful information that you provided. I 

have been faxing and mailing it to everyone involved. I have found that 

many folks don’t have a clue and need an education.” 

“Thanks again. I love having this support available.” 

“We are sincerely appreciative for all the help from the national office. I 

know it made a difference and I felt that it helped educate me. I went 

into the meeting better prepared and more confident than I ever thought 

possible.” 

“Thank you all so much. We can never repay you for the wonderful help 

you have given our family.” 

“As always, thank you for all that you continue to do for our kids and our 

families. Your job is tireless and invaluable...you and your crew are 

certainly worthy of praise.” 

“Thanks to all you guys at PWSA. Your organization is the greatest!” 

Rachel Forster at the national office 

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Annual Report 

PWS Advisory Board Meeting 

October, 2008 

Sarasota, Florida 

Front row: Lauren Lange; Brooke Fuller 

Middle row: Conor Heybach; Shawn Cooper; Andy Maurer 

Back row: Abbott Philson; Kate Kane 

Prader-Willi syndrome (PWS) is a birth defect identified in 1956 by Swiss doctors 

A. Prader, H. Willi, and A. Labhart. There are no known reasons for the genetic accident that causes this 

lifelong condition, which affects appetite, growth, metabolism, cognitive functioning and behavior. 

Prader-Willi Syndrome Association (USA) was organized in 1975 to provide a resource for education and 

information about PWS and support for families and caregivers. PWSA (USA) is supported solely by 

memberships and tax-deductible contributions. 

To make a donation, go to: www.pwsausa.org/donate

One of the great joys of being able to serve as the Acting Executive Director 

for PWSA (USA) has been the opportunity to get a different vantage point 

on the totality of PWSA (USA)’s work. And the scope of that work is truly 

breathtaking! Our achievements in 2008 were even more impressive as 

they were accomplished in a declining economy in the United States. This 

meant, like all non-profits, PWSA (USA) had to learn to live with fewer 

resources across the board. Yet, despite these significant challenges, PWSA 

(USA) continued to lead the way in providing creative, effective, high- 

quality services and resources to people and families living with PWS. 

In 2008 we: 

• Maintained and enhanced the PWSA (USA) website which is the 

single most comprehensive source of PWS information in the 

world. 

• Provided important resources to help those serving people with 

PWS in a variety of settings. 

• Provided non-medical crisis counselors to assist with school, 

legal, placement and behavioral problems. 

• Maintained a 24 hour medical crisis line to provide timely advice 

and information when a person with PWS is ill. 

• Brought together researchers, physicians, and professional 

providers to share ideas and formulate future strategies to 

improve the lives of people living with PWS. 

• Mentored new parents with a newly diagnosed child with PWS to 

connect them with important resources and the vibrant PWS 

community of parents and professionals. 

Our Mission: PWSA (USA) is an organization of 

families and professionals working together to 

promote and fund research, provide education, and 

offer support to enhance the quality of life of those 

affected by Prader-Willi syndrome. 

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from the Acting Executive Director 

• Provided bereavement support to people mourning the loss of a 

loved one with PWS. 

• Coordinated awareness projects to spread the word about PWS. 

• Advocated for issues important to the lives of people and families 

living with PWS. 

• Worked in partnership with PWSA chapters to strengthen their work 

in local communities. 

• Identified and funded cutting edge research into the causes of PWS 

and potentially effective treatments and interventions. 

• Provided training for schools and residential settings serving people 

with PWS. 

• Collaborated with the international PWS community through our 

partnership with the International Prader-Willi Syndrome Association 

(IPWSO). 

• Brought together parents and medical and professional providers for 

a national conference which included separate days for a scientific 

conference and a professional provider conference. 

• And more! 

As I said, breathtaking in its scope! It is an honor and a privilege for our staff to 

serve as the first call for help for most people and families living with PWS. We 

invite you, as you review our work in these pages, to commit to partnering with 

us in fulfilling our mission of service to the PWS community by sharing your 

time, energy, and resources with PWSA (USA) so that regardless of the 

economic times, we can continue to be a beacon of hope for people and 

families living with PWS. 

Evan Farrar 

Acting Executive Director

In 2008 PWSA (USA) made great strides in collaborative efforts on 

research. We approved funding for three new Grants and two upcoming 

2009 research conferences for a total of $387,699.000. PWSA (USA) also is 

providing ongoing funding for seven other grants. 

Autistic Symptomatology in PWS: Examining Behavioral and 

Neurobiological Similarities between PWS and Autism Spectrum 

Disorders – Principal investigator is Anastasia Dimitropoulos, Ph.D. 

Rare Disease Clinical Research Consortium -- Angelman, Rett, and Prader- 

Willi syndromes – A $50,000 a year for five years commitment to support this 

major research effort to supplement the reduction of NIH funding and 

ensure the second five years of the natural history study of PWS. 

Univ. of Al. at Birmingham PWS research conference 

International Hyperphagia Conference – To bring together multiple rare 

disorders around the world dealing with the hunger and tremendous drive 

to consume food. 

Impact of PWS on Healthy siblings & Quality of Life for Caregivers 

Ongoing grant funding for: 

1. Genetics of Restricted Repetitive Behavior 

2. Development Of A Microsphere Suspension Assay For The High Throughput 

Screening Of Prader-Willi Subjects 

3. Expression Of Four Genes Between Chromosome 15 Breakpoints Bp1 And 

Bp2 In Subjects With Prader-Willi Syndrome And Impact On Cognitive And 

Behavioral Measures 

4. Impact of Dietary Content upon Gastrointestinal Motility in Individuals with 

PWS 

“It’s been great to have PWSA (USA) as a model to look in developing 

AMC Support. I have been so impressed by the membership-supported 

medical database that PWSA (USA) has been able to create, and would 

like to do something similar for AMC Support.” 

Harold J. P. van Bosse, MD 

Shriners Hospital for Children—Philadelphia 

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Research Support 

5. The Expression and Regulation of Necdin in the Mouse Central Nervous 

System: Relation to Hyperphagia 

6. Functional Magnetic Resonance Imaging of Reduced Satiety in Prader-Willi 

Syndrome and Obesity 

7. Causes of Death in Prader-Willi Syndrome (ongoing) 

PWSA (USA) has been involved with other collaborative research 

efforts: 

Our Director of Research & Medical Affairs, Janalee Heinemann, is co-chair of 

the CPAG (Coalition for Patient Advocacy Groups) with the ORD (Office of 

Rare Diseases) that is in conjunction with the NIH rare diseases grant with 

which we participate. There are over 7,000 rare diseases. The meetings and 

conference calls in which Janalee participates give visibility and focus to 

OUR rare disease and helps to promote researchers collaborating with 

advocacy groups. 

PWSA (USA) has data on more than 1,747 children and adults with PWS in 

our first medical survey, and 259 from the second medical questionnaire. 

We also have additional information from three focused surveys on autism 

and PWS, scoliosis & PWS, and assisted reproduction & PWS. The results of 

this extensive medical data has been valuable to multiple PWS researchers 

both in the USA and around the world. 

Our study of deaths in PWS continues and three articles have been 

published in medical journals as a result. We owe a great deal of gratitude 

to PWS families who have been willing to fill out the PWSA (USA) 

questionnaires, release medical records and autopsies, and in some cases 

donate tissue. 

We believe in sharing our information to save lives. 

“I feel compelled to send you an e-mail once again to thank you and your 

organization for the information you sent to me. At the time I contacted your 

group we were having a very difficult time with our son. As it turned out he 

was over-medicated by a doctor who didn't understand a Prader-Willi patient. 

Using information from the Primer we found a Psychiatrist who changed his 

medication and our son is back to his normal self...” (a parent)

Hospitals, physicians, and parents from all over the world consult with PWSA 

(USA) on medical emergencies and questions daily. Through phone, fax and 

e-mail, PWSA (USA) consults with both our Clinical Advisory Board and 

Scientific Advisory Board and responds to all through a Triage Support 

System. 

PWSA (USA) now provides 24-hour-a-day support for medical crises and 

provided medical emergency support and medical advocacy in 2008 for 

over 470 families in 2008. This does not account for the hundreds of 

professionals worked with via phone and email on situations where they 

cannot give a name due to confidentiality, therefore are not in the database. 

We are busy saving lives 24-hours-a-day! 

“Just to let you know my daughter finally saw a psychiatrist and was given 

drugs to help her! She is so much calmer and feeling a hundred times better! 

Thanks so much for all of your help and the handbook was given to the 

doctor and staff. “ (a parent) 

In 2008, PWSA (USA) spread Medical Awareness through: 

PENS (Pediatric Endocrinology Nursing Society)—Cincinnati, OH 

PWSA (USA) not only had an awareness booth at this national conference, 

Janalee Heinemann, Director of Research & Medical Affairs teamed up with 

an endocrinology nurse practitioner to present on Prader-Willi syndrome to 

all of the conference attendees. 

ENDO 2008 (The Endocrine Society)—San Francisco, CA 

There were over 7,400 physicians and researchers in attendance and 9,000 

total. Besides giving out hundreds of educational materials, we gave out 

approximately 300 full folders/packets we created on growth hormone and 

“Thank you so much for your help! The hospital did receive them 

(articles), and I made sure the nurses and the doctor each had copies, 

and it was put in the front of her chart. 

We really do appreciate the help!!! (a parent) 

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Medical Intervention Support 

other medical issues, and another 75 folders we created with materials 

specifically for researchers. 

ESPE (European Society for Paediatric Endocrinology))—Istanbul, Turkey 

As IPWSO’s consultant on medical affairs, Janalee Heinemann did the PWS 

awareness booth conference with Giorgio Fornasier from Italy. PWSA (USA) 

contributed most of the articles in the packets. This conference was 

attended by endocrinologist from all over the world. Information packets 

were distributed to 250 physicians from many countries around the world. 

Due to this conference, five new countries became IPWSO members: Libya, 

Lithuania, Iran, United Arab Emirates and Uzbekistan. 

NSCG (National Society of Genetic Counselors))—Los Angeles, CA 

An awareness booth with educational materials for genetic nurses from 

around the nation. They often are the first contact with our families. 

For each of these events, we were consistently busy at our booth. It is 

exciting to see the interest in Prader-Willi syndrome grow and imperative 

that we continue to educate the medical community. A big thank you goes 

to the sponsors that make our involvement at these events possible. 

International Support 

PWSA (USA) continues to send packets of educational materials free of 

charge to professionals and parents in other nations. These nations are 

encouraged to translate the material into their own language. PWSA (USA) 

has members in 82 nations – many of whom have no other support system 

in their country. Email support is provided daily for desperate parents and 

professionals in other countries, and in 2008, people from 199 countries 

visited PWSA (USA)’s website. 

In Memory of 

Pamela Faith Eisen 

November 19, 2008 

Extraordinary parent, wife, friend, confidant, 

associate, and President of IPWSO

In 2008 the Crisis Intervention Program continued to see an increase in the 

number of crisis cases being handled by PWSA Crisis Counselors Evan 

Farrar, Kate Beaver (the Alterman Crisis Counselor), and David Wyatt (Crisis 

Counselor Emeritus). At least two factors contributed to this increase: 

1. Expanded awareness of our program and its effectiveness. 

2. A decline in the economy resulting in diminished state and federal 

resources for people with disabilities and school funding for children 

with special needs. In addition, many families living with PWS 

experienced job losses and income reductions making it an especially 

challenging year for families to make ends meet. 

In response to this increase, the Willett Fund continued to be a vital 

resource assisting three families with legal fees, fifteen families with 

transportation to the Children’s Institute in Pittsburgh for in-patient crisis 

intervention, and over thirty families were assisted with on site school or 

phone consultations across the country facilitated by a trained PWS 

educational consultant. In order to maximize the use of the Willett Fund 

the Crisis Intervention Program implemented some new guidelines 

including: 

1. Putting an emphasis – through special training – on equipping crisis 

intervention counselors to provide more effective initial response to 

school crisis cases thus limiting the use of a paid PWS educational 

consultant to only the most extreme crisis situations. 

2. Placing a cap on the amount any one family can receive for 

transportation costs related to in-patient crisis treatment at the 

Children’s Institute. This cap, though, can be waived in exceptional 

circumstances. 

“Thank you so very much for your support and guidance at a time 

when I really needed someone to talk to. As I mentioned to you, 

this was the very first time I called this PWSA telephone number 

since the birth of my daughter six years ago, and I think I may have 

waited too long to do so. Your patience, expertise, and kindness 

are appreciated.” (a parent) 

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Crisis Intervention Program 

The Crisis Intervention Program has also continued to develop new 

strategies for working together as a team by meeting monthly via 

conference call and, for the first time, gathering for a face to face meeting in 

Sarasota to spend concentrated time together evaluating our work and 

planning for the future. A major focus of the meeting was providing crisis 

team members with a “hands on” educational/behavioral training 

conducted by Mary K. Ziccardi who serves as one of PWSA’s National 

Educational Consultants. This level of planning and coordination will 

continue to be critical to the success of our program especially if the 

economy continues to struggle, our agency resources diminish, and calls for 

assistance increase. 

Finally, 2008 saw the Crisis Intervention Program link directly with the 

international community through Evan Farrar’s participation in the First 

International Caretaker’s Conference in Herne, Germany sponsored by the 

International Prader-Willi Syndrome Organization (IPWSO). He was the only 

full-time crisis counselor present at the conference and helped to lead the 

most popular conference workshop entitled, “Crisis Intervention and 

Management.” The conference was an opportunity to share internationally 

the PWSA (USA) model for crisis intervention and begin to establish a global 

network of contacts for the PWSA (USA) Crisis Intervention Program. 

“...The wonderful support from my husband, our families, friends, and most of 

all, you guys at PWSA (USA) makes me realize that the care for my daughter 

is not on my shoulders alone. That I am not alone in the struggle.” 

As we move into the future, the Crisis Intervention Program remains 

dedicated to continuing to provide the highest level of professional crisis 

assistance to people and families living with PWS. 

“I was told to call a PWSA crisis counselor and after explaining my 

son’s situation and health problems, I felt as if I had known the 

counselor all my life. The counselor was so supportive and has 

worked very hard to help us.” (a parent)

In the year 2008, some changes have taken place in relationships with 

chapters and local support groups supported by PWSA (USA). Currently, 

family support consists of Parent Mentoring, Chapter Relations, Focus 

Group Management, Volunteer recruitment and email support groups. 

Each of these areas are dependent on each other. We are striving to make 

these services seamless for families and chapter leaders. 

Chapter Development 

PWSA (USA) is assisting various states with recreating or creation of 

chapters. We are working toward helping the families in every state, with 

or without chapters. Our efforts have made significant strides in two states: 

North Carolina and Texas. The chapters are encouraged to work with PWSA 

(USA) to support new parents with parent mentoring and focus groups. In 

addition, we are encouraging the chapter to host an email group for state 

issues in their state. 

Focus Groups 

In April, 2008, PWSA (USA) began a proactive movement to help everyone 

in our country find support either through a local chapter or in support 

groups. When we learned that some parents were reluctant to attend a 

“support group” when they weren’t feeling any need for support, the term 

was changed to “focus groups.” PWSA (USA) has 26 active chapters and 

many additional focus groups. You can find contact information for your 

state chapter at: www.pwsausa.org/links/chapter.htm 

The process for creation of a focus group is to notify PWSA (USA) of the 

desire to be involved in a local focus group. We will contact existing 

chapters in the state to ask for their assistance with the new focus group. 

PWSA (USA) provides a one-time mailing to announce the formation of a 

group in the area. 

“My son now 19 months old was diagnosed with Prader-Willi 

syndrome at 3 weeks of age. I was devastated at the time and scared 

to death. But as a parent I knew I needed to find as much information 

as I could and your website was just amazing!...I want to thank you so 

much and let you know the information was great and very helpful. 

Wish you could see him, you would be proud too.” Thanks! (a parent) 

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Family Support and Other Programs 

Volunteers 

We have 161 people willing to do anything for PWSA (USA). We are using 

them to start focus groups, find eligible parent mentors, find those with 

Spanish for interpretation, spread awareness, do fundraisers and occasionally 

for small tasks which can be outsourced. 

Parent Mentoring 

We are expanding our parent mentors so that we can get more local support 

for the newly diagnosed. Also, we are working with the chapters and focus 

groups to link them to local resources in their state. 108 families were 

mentored in 2008. We offer a free year of membership, which includes our bimonthly 

newsletter, and we send information in the “Package of Hope” to 

help the families deal with the newly diagnosed. 

Email Support Groups 

PWSA (USA) has 11 email support groups: Ages 0-5, Ages 6-12, Teen, Ages 18 

and up, Grandparent, Siblings, People with Prader-Willi Syndrome, Military 

Families, Prader-Willi syndrome and autism, Spanish Group and Providers 

Group. Each group has two volunteer moderators to help keep the topics on 

issues that support the purpose of the group. Currently, we have 1,625 email 

participants (not duplicated) in the groups. 

Website 

PWSA (USA)’s website is the world’s largest single source of information on 

Prader-Willi syndrome. In 2008, we had 189 countries visit our site with a 

monthly accumulative visitor total of 827,677 visits! While these visitors were 

on our website, they viewed 1,709,083 pages. The website hosts many state 

chapter sites and has separate areas for members, providers, state chapter 

leaders, families and medical professionals. 

“I have printed out some handouts from the website to share with 

some of my co-workers and am looking forward to a great year with 

my new student. Her mom is a great source of information... but it is so 

helpful to be able to pull your site up without having to bother mom 

each time. Again, thanks so much for helping me provide the best 

possible Kindergarten year for my new sweet one.” (a teacher)

Development 

Grassroots Efforts Were a Main Source of Support 

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Development and Conference 

2008 had some very amazing stories of giving. Used to helping families in 

crisis, PWSA (USA) was facing a significant shortfall of funding by mid-year and 

projected a year-end crisis of its own in large part due to the weak economic 

climate. Donations were significantly down from most revenue streams. PWSA 

(USA) made some significant adjustments to face the fiscal emergency, 

including a new segmented mailing and emergency notifications of the state 

of the organization. Those efforts along with grassroots fundraisers, and a 

particular remarkable effort by a South Carolina high school making the 

biggest difference, helped PWSA (USA) remain true to its vision to “secure the 

resources necessary to accomplish our goals.” 

On October 31st, Eastside High School in Greenville, SC announced a 

$224,575.59 donation to PWSA (USA) in a packed football stadium at the 

conclusion of their annual high school spirit week. Parent and PWSA (USA) 

member, Linda Johnson, who is mom to little Hannah who has PWS, had 

applied in May for consideration on behalf of PWSA (USA) and with Hannah in 

tow, spoke in front of student government members about the syndrome and 

what funds could do to help the crisis and support services for PWSA (USA), for 

which the funds were ultimately earmarked. Hannah captured their hearts and 

PWSA (USA) was selected out of 18 charities that had applied. After all the 

funds were raised, the student council committee in charge of Spirit Week 

went into a huddle and gave their thanks for having a successful fundraiser 

that will provide help to children like Hannah with PWS. 

PWSA (USA) also continued its annual drives, the Lose-A-Thon and Valentine’s 

Day Research Campaign. The two efforts combined raised over $43,000. 

left to right: Linda and Archie 

Johnson; Hannah Johnson; 

Selvy Miros, Spirit Week 

President; Ryann Kroske, Senior 

Class President; Katie Henson, 

Student Body President; Olivia 

Johnson, Hannah’s big sister 

PWSA (USA) incorporated more online channels to capture donations. 

Firstgiving.com was one of those ways. Supporters create their own 

personalized fundraising page from a PWSA (USA) launch page. Donations 

go directly to PWSA (USA) and each page link can be mailed or emailed en 

masse to others. A demonstration of how easy it is to use at the April Board 

meetings resulted in five board members setting up pages right then and 

there in just 20 minutes. 

Grassroots fundraising continues to be a significant part of the heart and 

soul of PWSA (USA). 

Conference 

PWSA (USA) along with partner chapter, Prader-Willi Syndrome Association 

of Wisconsin, produced the 30 th Annual Prader-Willi Syndrome Association 

(USA) National Conference themed Moo-ving Forward, on July 2-4, 2008 at 

the Wyndham Milwaukee Airport Hotel and Convention Center in 

Milwaukee, WI. The PWSA (USA) national conference is the largest 

conference in the world dealing with PWS. It is one of the best opportunities 

to share ideas, support, knowledge and hope. The response received about 

the event continues to underscore the value of each part of the program. 

Over 400 people, including more than 100 volunteers, attended. 

After Scientific and Providers Conferences and Chapter Presidents Day on 

Wednesday, July 2, the General Conference opened Thursday in an emotionfilled 

session with Richard Pimental, one of the leaders in forging the 

Americans with Disabilities Act. His personal story brought tears to many as 

he combined memories, history, and humor to illustrate the power of love. 

"…the conference was a great experience for myself and my daughter." 

"The conference turned out absolutely fantastic!" 

The Spirit Week team, with 

Hannah Johnson in the front 

row and big sister Olivia 

in the third row

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Awareness and Media 

Awareness 

Awareness of PWS continues to grow with the help of many, many volunteers. 

Through grassroots events and PWS Awareness Month of May, hundreds of 

people learn about PWS annually and the vital work performed daily at PWSA 

(USA). 

Events make for good awareness 

February 22nd at Oracle Arena in Oakland, CA, was the date and place of the 

Prader-Willi Awareness Night in the NBA: Golden State Warriors vs. the Atlanta 

Hawks which raised an outstanding amount of knowledge about PWS thanks 

to Ashley and Clint Hurdle, sister and father respectively to 5-year-old Madison 

Hurdle who has PWS. Contributing to these efforts was Michael Moore of 

Comcast. For four weeks prior to the event, ten different Comcast Networks in 

the Bay Area ran a Public Service Announcement about the event more than 

350 times. In addition, more than 300 PWS brochures and wristbands were 

given away to attendees at a booth on the first floor. “I don’t think Oracle 

Arena has ever been so full of hope, love and support,” said Ashley. 

Michael Paul of Georgia, 23, who has PWS, threw out the opening pitch on 

May 29th for the Rome Braves baseball game and was then relieved by John 

Smoltz, Atlanta Braves pitcher who was in Rome for rehab from injury. Thanks 

to the Paul family, it was officially PWS Awareness night at the stadium. 

Zak Bassel, 3, who has PWS, was poster child for YAI’s Central Park Challenge in 

New York City on May 31st. Approximately 6,000 people attended. Zak and his 

parents appeared in a Public Service Announcement. Also, Zak’s dad, Jamie, 

shared that Zak rang the bell for the New York Stock Exchange on May 30th. 

Nina Roberto in New York, mom to Sonny, 5, who has PWS, wrote to her 

Assemblyman regarding a resolution. It was approved, thus May was officially 

considered PWS Awareness Month in the entire state of New York. Nina also 

made a video and put it on YouTube. 

PWS Awareness Month 

This year, the committee dedicated efforts to create and expand the program. 

Among new items were a press kit, a new PowerPoint presentation called “Did 

You Know” providing interesting facts about PWS and what its affects are on 

the family and when dealing with the syndrome in the real-world, a new handout 

about how to set up a PWS awareness booth, a new hand-out about 

blogging and how to incorporate PWS awareness into blogs, and more 

promotional items. 

Media 

Many stories appeared in the United States in print, online, on television and 

radio from local and national news outlets to medical journals to blogs. 

Prader-Willi syndrome was covered or mentioned from many different angles 

and each time it was, awareness occurred. Thousands more people learn 

about PWS every year with this exposure. 

Perhaps one of the most poignant, thorough and accurate coverage received 

in 2008 came from Howard County Times/explorehoward.com in June in 

Maryland with the story of father and son, Lon and Max Siedlitz called, “I Will 

Always Feed You” written by Steve Kelley. It is “The story of a father and son 

and their battle against a debilitating disorder” and it was accompanied by 

exceptional photos and a multimedia piece, “HUNGRY: Living with Prader-Willi 

syndrome” by Maisie Crow. 

Both can be seen at: 

http://www.explorehoward.com/news/9203/i-will-always-feed-you/ 

A Ride for PWS 

On March 27 th , Steven Tomasini and Robert Hughes of New York travelled all the way to PWSA (USA)’s headquarters in Sarasota, Florida to cycle 370 miles from 

Sarasota to Key West. With their focus to raise awareness for PWS ahead of them, they literally went the distance for PWSA (USA), arriving at their destination three 

days later on March 30th. Inspiration for the ride came from Steven’s friend Denise Steck, whose three-year-old daughter, Kayleigh, has PWS. “Denise and her husband 

James are both very strong individuals,” Tomasini said. “Their strength inspires people and it inspired me. Every time I see them together as a family I see such great hope for 

what it is we should all be doing in life: living, loving and growing together and learning that when life gets challenging we live and learn from it.”

Diamond: $50,000+ 

Golf Fore PWSA Charity Annual Golf Tournament in Honor of Madison Hurdle 

—Clint and Karla Hurdle and Committee 

Eastside High School’s 2008 Spirit Week Fundraiser—Archie and Linda Johnson 

Gold: $20,000+ 

The 2 nd Night to Remember: An Evening of Cabaret—Steve and Michele Leightman 

Silver: $10,000+ 

1 st Annual Laugh for a Cure—Jamie and Jacqueline Bassel 

2 nd Annual Dash for PWS—Matt and Cindy Szapacs 

2 nd Annual Softball Tournament in Honor of Anneke Kramer—Shannon Daale, 

Stephanie Daale, Ryan and Stacy Kramer, and Jenna Huitink 

4 th Annual Madison Hurdle Coed Softball Tournament—Dino and Bobbi Martello 

5 th Annual Jack Martin Bevacqua Dinner-Dance—Christie Bevacqua 

Bronze: $5,000+ 

4 th Annual Jacob Bingo—Anita Perrault and Family 

4 th Annual Clyde’s Run—Hope Mays/Georgia Association for PWS, Inc. 

“Guns and Hoses” in Honor of Mickey Phernetton—Patrick and Lisa Phernetton 

Putt for PWS in Honor of Charlie and Riden—Dominique DeLeage/Jessica Howard 

PWS Fest 2008—Jim Kane and Mike Vogrin 

PWS Night at the Mariners—Dave and Beth McLean 

Ryan’s Run for PWS—Ryan O’Sullivan 

Major Donor: $1,000 + 

1 st Annual “Lewis Palooza” in Honor of Jett Lewis—Darren and Lindsay Lewis 

2 nd Annual Shawna’s Walk-a-Thon for PWS—Shawna Bush and Joyce Bush 

PWS Benefit Bunko Tournament—Kate Loper 

Car Show Fundraiser for PWS—Kirk and Dorothy Townsend 

Change for PWS—Kevin and Maureen O’Neil 

Chicago Marathon Run in Honor of Frank Arnold—Mary Ann Arnold 

Fundraiser in Honor of Kiley Ann Quinn—Sabra Quinn 

Fundraiser in Honor of Morgan Aubrey Gray—Ann Dock 

Fundraiser in Honor of Hannah Wilkinson—Tonya Wilkinson 

Fun Day at the Moose—Barbara Emmons 

Leslie’s Fete—Leslie Holtoff 

Newport Seafood and Wine Festival—Friends for PWS 

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Grassroot Events 

Major Donor: $1,000 + (cont’d) 

Parrothead Party for PWS Advocacy—Friends for PWS 

Pink Purse Society-Jupiter Chapter Benefit for PWS—Michelle Wallace 

PWS Pool March Madness—Jim Kane 

PWS Yard Sale—Dorothy Morse 

Ride for PWS—Steven Tomasini and Robert Hughes 

Seattle to Portland Bicycle Classic Fundraiser—Mike Kuna and Scott Kuna 

Sophie’s Walk for PWSA—Jennifer Bolander and PWS Association of Ohio 

Winnie Gators Rally Fundraiser—Florida Winnie Gators and Bev Delemos 

Contributor: $500 + 

2 nd Annual Elizabethtown College Night of Music—Autumn Metcalf 

3 rd Annual Charity Golf Outing—Maurice Fox, Peter Kearney and Denise Steck 

Aidan Harris’ 5 th Birthday Benefit in Honor of Julia Kenney—Annie Harris 

and Tammy Kenney 

Casual & Pretzel Days at EDS in honor of Justin and Joshua Metcalf 

—Heidi Metcalf 

Comedy Sportz Team Improv—Evan Postal 

Fundraising Page in Honor of Alex Agarwal—David and Janice Agarwal 

Fundraiser in Honor of Audrey Rakowski and Brock Lemmon—Dawn Rakowski 

Fundraiser in Honor of Julia McLane—Cheri McLane 

Jewelry Artisans Open House—Anita Ashe 

Jenna’s Hope For A Cure Fundraiser—Emanuel and Pam Santos 

Race Day Awareness and Fundraiser—Tammy Beauchamp 

Supporter: $499 and under 

Bird Hunt for PWSA (USA)—Shane Loper 

Casual Day Fundraiser in Honor of Grant Whiting—Debra Whiting 

Fundraiser in Honor of Austin, Allison and Cooper Loupe—Rebecca Loupe 

Fundraiser in Honor of Declan Hudson Hanson—Angela Hanson 

Fundraiser in Honor of Dewayne Perron—Krista Perron 

Fundraiser in Honor of Hudson Self’s 2 nd Birthday—Josh and Megan Self 

Fundraiser in Honor of Trevin Matthew Redner—Crystal Redner 

Julianna’s Wish—Tom and Dawn Romine 

Mandi Smith’s Fundraising Page—Mandi Smith 

Unexpected Moments—Rebecca Loupe 

We try to be accurate and apologize for any omissions or errors. Special thanks goes to the 

individuals who held a fundraiser and their supporters. We value everyone’s efforts!

Diamond: $10,000+ 

Colorado Rockies Baseball Club Foundation, Inc. 

Combined Federal Campaign 

Gerald J. and Dorothy R. Friedman Foundation 

Bob and Mary Hill 

ING Multi-Financial Securities 

Josilyn Faith's Foundation for PWS, Inc. 

Pfizer Inc. 

Sam P. Alterman Family Foundation, Inc. 

Joseph and Rosemarie Schreier 

Storr Family Foundation 

The Lincy Foundation 

Tommy and Michelle Torbert 

Lois and Steve Willett 

Gold: $5,000+ 

Jamie and Jacqueline Bassel 

Steve Braccini 

Chris Brophy 

CIBC World Markets Corporation 

Clyde's Run 

Georgia Association for PWS, Inc. 

Clint and Karla Hurdle 

Jim and Kit Kane 

Land Securities Investors LTD 

Rob and Debra Lutz 

David and Anne Miller 

Michael Peebles 

PWS Alliance of New York Inc. 

PWS Association of Colorado 

PWS Association of New Jersey 

2 0 0 8 

Annual Donors 

Gold: $5,000+ (cont’d) 

PWS Association of Ohio 

PWS Association of Wisconsin, Inc. 

Ronald B. Anderson DDS, Inc. 

Troy Honda 

United Way of New York 

Silver: $2,500+ 

David and Janice Agarwal 

CFC-Gulf Coast 

CFC-Overseas 

Jim and Joan Gardner 

Marc and Shoko Gotoh 

Tom Hall 

Tim and Carol Hearn 

William and Donna Jallick 

Johnson & Johnson - Matching Gifts Program 

Lori and Darrin Kerbs 

Steve and Michele Leightman 

Living the Dream Foundation 

Merrill Lynch & Co Foundation, Inc. 

O'Keefe Family Foundation 

Prader-Willi Association of Utah 

Prader-Willi California Foundation 

Prader-Willi Families of Ohio 

RBC Dain Rauscher Foundation 

Rocky Mountain Fondue Co 

Karin Taylor 

United Way of Greater Milwaukee 

Joyce Wacks 

Paul and Amy Wissmann

Bronze: $1,000+ 

Tony and Laura Abbott 

John and Dawn Allard 

Scott and Deborah Arant 

Affinity Marketing Partners LLC 

Gerard Ashbeck 

Barclaycard US 

Norman and Cynthia Barkeley 

Barron Industries Inc. 

Delfin Beltran, M.D. 

Alan Bleser 

Henry Block 

Andrew and Laurie Braun 

Scott and Catrina Bubier 

Caremark RX Inc. 

Suzanne Cassidy, MD 

CFC-Global Impact Overseas 

ClearChannel 

Comcast Corporation 

Vince and Florence Connelly 

Thomas and Lisa Cox 

Crosby Family Foundation 

Mike Dahlheim 

David Dempsey 

Peter and Kathy Devlin 

Joseph Di Filippo 

William Doherty 

Elisabeth Dykens, Ph.D. 

Dynamic Solutions International Corp. 

Elko High School 

Gary Ferdig 

Ferrara Pan Foundation 

Kevin Fitzgerald 

Gayla Fitzpatrick 

Friends for PWS 

Jim and Sue Fuller 

Molly Fuller 

Bob and Barbara Gallagher 

2 0 0 8 


Bronze: $1,000+ (cont’d) 

Goldman, Sachs & Co - Matching Gift Program 

Robin Fleischmann and Mark Greenberg 

Jerry Hall 

Thomas Hall 

Erich and Pauline Haller 

Chris and Tonya Hardman 

Christopher and Cortney Hayden 

Al and Janalee Heinemann 

Jay Coggeshall and Susan Henoch 

John and Mary Sue Heybach 

Mark and Angela Hughes 

Clint and Louise Hurdle 

James Van Becelaere Company Inc 

Daniel and Linda Jannette 

Douglas Jemal 

Jones Lang Lasalle Americas 

David Jones 

William Killian 

Marjorie King 

John and Pat LaBella 

Ronnie and Ira Levine 

Wallace and Virginia Livingston 

Jim and Carolyn Loker 

Thomas and Amy Luttrell 

Magner International Corp. 

John and Heidi Magner 

Dennis Martino 

Barbara McManus 

Dorothy and Thomas Morse 

Jessica and Brian Murray 

Donovan Nichols 

Martin Niehaus 

Thomas and Diane Nussbaum 

Maureen O'Neil 

Carlos and Marilyn Pajon 

Michael and Donna Pappagallo 

Kyle and Anita Perrault 


Scott Peterson 

Mike and Amy Pfeiffer 

Charles and Deloris Phillips 

Pieland LLC 

Vanguard Charitable Endowment Program 

John and Betty Pogrant 

Craig and Susan Polhemus 

Prader-Willi Homes of Oconomowoc 

PWS Association of PA 

Richard and Patricia Quinn 

RMF Acquisition Co 

Mark and Nanette Roenigk 

Michael and Benita Romano III 

Jeffrey and Arlene Rosenthal 

RSC Equipment Rental 

Results Weight Loss 

Bill and Norma Rupe 

Tom and Lorrie Russo 

Mark and Linda Ryan 

Paul and Diane Schaaf 

Brad Schultz 

Schwab Fund for Charitable Giving 

Robin and Ellery Sedgwick 

Curt and Marion Shacklett 

Sisters of St. Joseph of Carondelet 

SOMIP, Inc. 

James and Denise Steck 

William Stege 

Michael Steger 

Adam Stillo 

T/A Advance Pool Service 

Michael and Muriel Tate 

Peter and Alice Tenbeau 

The Bank Street Group LLC 

The Jesus Fund 

The Pink Purse Society 

The Prudential Foundation Matching Gifts


Barbara Thomas 

Thompson Baptist Church 

Tri-Mont Engineering Company 

United Way of Central Maryland 

Unity 

Ted and Jennifer Van Zelst 

Adrienne Vantine 

Wal-Mart Foundation 

Marcia White 

Roger and Kathy Wilson 

Winnie Gators of Florida, Inc. 

Tom and Sarah Young 

Allan Zalesky 

Contributors $500 + 

Robert Dalle and Ronald Daale 

Akin & Porter Produce Inc 

Michael Alterman 

American Express Charitable Fund 

Abe and Lori Anderson 

Donald Armento MD 

James and Margaret Avent 

Curt and Cinda Ball 

Paul and Robin Barrett 

Jay and Ann Behnken 

Alfred and Marie Bevacqua 

Kevin and Christie Bevacqua 

Arlene Bird 

Boyer Machine, Inc. 

Ladd & Rita Braden 

Mike and Jenise Braden 

Jere and Isa Breneisen 

Merrick and Gail Bromberg 

Dave and Lougene Burleigh 

John and Mary Burns 

Stephen Burns, MD 

Merlin and Ranae Butler 

2 0 0 8 



Kenneth Byck 

Nancy and Thomas Cahey 

Caldwell Chiropractic P.C. 

Carlson Marketing Group 

Susan Furste and Fred Carpenter 

Juan Castresana 

Dale Cendali 

Robert and Barbara Christenson 

Michael Burns and Sybil Cohen 

Coors Field 

Duane and Caroline Coykendall 

Thomas and Jane Cramer 

D & M Enterprise Group LLC 

Daale Trucking Inc. 

Jerry and Sherri Daale 

Delaware Valley Brokerage, Inc. 

Brian and Sandy Dickey 

Robert and Patty Dion 

Double Builders Inc 

Irl and Patricia Duling 

Gregory Federbush 

John Fehr 

Alan and Deborah Feldman 

Finesse Dental Lab Inc 

Eamonn and June Finnerty 

Walt and Marge Foran 

Barbara Gamble 

Ralph Garlick 

Nikolay Gavrishev 

Patrick and Kelly Gibbs 

Give With Liberty Employee Donations 

Carol Hanna 

Bruce and Karen Harrison 

Robert and Cecilia Harrison 

Brian and Kelly Hartley 

DYCON Enterprises 

Kerry Headley 


Kathleen Healy 

Laurene Heybach 

Paula Heybach 

Brian and Heidi Hooyer 

Tom and Jessica Howard 

Rick and Julianna Howard 

Peter Hupperich 

IBM Employee Services Center 

Lisa and Jeff Jahn 

Ralph Johnson 

Karlie Anne Interiors Inc 

Frank Keenan, Jr. 

Elizabeth Kenney 

Bill and Barbara Kerrigan 

Tracey Kihnke 

KLM Group, Inc. 

Tom and Konstantina Koulouris 

Matthew Kulbe 

Gary and Adrienne Lamanno 

Joseph and Alfreda Larkin 

Mercedes Lat 

Steve and Bonnie Lazar 

Thomas and Eileen Leahy 

Phillip Lee, MD, FAAP, FACE 

Brett and Denise Lewis 

Robert Lorenzini 

Douglas and Jean Lowe 

Steve and Susan Lundh 

Richard and Patricia Lutz 

Garth and Danielle Magness 

Paul and Sue Mahler 

Louis and Lori Mangieri 

Anne Manning 

Hal and Cindy Marshall 

Harold Marshall 

Denise Mattia 

Timothy and Janice Maudlin

Contributors : $500+ (cont’d) 

Hope Mays 

Alan Mazzaferro 

Joseph and Florence McErlane 

McKinsey & Company 

David McPeak 

Brett Mealhow 

Kevin and Kara Medved 

Asheet Mehta 

Mental Health America of Indiana 

Kim and Lonnie Meredith 

Metcalf/EDS Fundraiser 

Ken Miller 

Michael and Katharine Mills 

Dave and Lota Mitchell 

Rick and Susan Moccia 

Chuck and Melinda Morrow 

Kevin Mullen 

Kevin Mungle 

Frank and Elizabeth Mungo 

Nadia Cavner Group at BancorpSouth 

Sunil Nayak 

Olympic Case Company 

Ryan and Jodi O'Sullivan 

David Paoli 

Park Place Womens Club 

Partners in Pediatrics 

Daniel and Sara Jane Pate 

Vernon and Nancy Paulson 

PeoplesBank 

David and Anina Pfeiffer 

Raymond and Virginia Podmenik 

Prader-Willi Support Nebraska 

Prader-Willi Syndrome of Minnesota 

Jonathan Preston 

Tom and Mary Prost 

PWS of MD, DC, VA, Inc. 

Quality First Produce, Inc. 

2 0 0 8 


Contributors $500 + (cont’d) 

Chris and Cheri Quesenberry 

Chuck Ranberg 

RiskMetrics Group 

Bernard and Elaine Roberts 

John and Carolyn Rodman 

Donald and Sarah Romano, Jr. 

Michael Root 

William Ross, Jr. 

Sam and Barbara Rubinson 

Luis and Mayra Rubio 

Richard Ruzicka, Jr 

Saint Luke's Regional Medical Center 

James and Margie Sappington 

Eric and Karyn Schaupeter 

Samuel and Patrice Scheck 

Maurice and Heng Schenk 

Ann Schidler 

Sandefur Schmidt 

Kristi Scott 

Gary and Sharon Seedorf 

Robert and Tanya Selden 

Eileen Seyfarth 

Joyce Shepard 

David and Susan Sherman 

Sinclair Associates LLC 

Gerald Sinclair 

Action for Boston Community Development Inc. 

Roger and Mary Smith 

Martha Snyder 

Brad and Sara Sofonia 

Stew Jackson Foundation Inc 

William and Jennifer Stewart 

Hans and Carol Storr 

Leo and Sonia Talarico 

Betsy, George, and Vicky Taylor 

Denise Taylor 

The Standard 

Contributors $500 + (cont’d) 

Jerry Timmer, Jr. 

Tommy Torbert 

Dorothy and Kirk Townsend 

James Trentacosta 

Tuskegee Airmen Motorcycle Club of VA 

United Way of Salt Lake 

United Way of San Diego County 

Vazzana Family Fund 

Gerald and Christine Waldrop 

Shawn and Caprice Weaver 

Roger and Ronda West 

Bruce and Bebe Whyte 

Robert and Daylene Wood 

John and Michelle Yager 

Mark Yosowitz 

Ruth Zimmerman 

Supporters $100 to $499 

2008 Colorado Rockies Fantasy Camp 

2nd Annual Dash for PWS 

3 Rivers CFC 

A I Technology Inc. 

A. J. Sanchez Consulting Engineers, Inc. 

Susan Aarhus 

Jack and Helen Aaron 

Lawrence Abler 

Robert and Phyllis Abrahamsen 

Karen Abrams 

Account Recovery Company Inc 

Harry and Laura Adams 

Sherman and Rita Adkins 

Adobe Systems Inc 

Aetna Foundation 

Ashiya Dudhia and Nick Agarwal 

Julia Albe 

Gary and Kim Albers 

Mark and Alice Alcorn 

Michael and Catherine Alessi

Supporters : $100 to $499 (cont’d) 

Jerome Alexander 

Richard and Jolayne Alger 

Kimberly Leahy and Nathaniel Aliberto 

Jewel Allen 

John and Olynn Allen 

Charles and Gladys Allred 

Christopher Allumbaugh 

Santos and Maria Alomar 

Judy and Dan Alsnauer 

Catherine and Rudy Alvarez 

RoxAnne Amato 

American Legion Community Service Fund 

America's Charities 

Sean Amery 

Gustavo and Mary Carmen Anaya 

Carolyn Anderson 

Lyle Anderson 

Inger and Bradley Andress 

Mark Angel 

Robert and Jo Ann Antanaitis 

Deborah and Robert Apodaca 

Amy Arant 

Mary Ann Arant 

Stacey Archer 

Jose and Karen Arencibia 

David and Carrie Armento 

Felisa Armento 

Andrew Arnold 

Peter Arnold 

Philip Arnold 

Lesley Arshonsky LCPC 

AT&T United Way/Employee Giving Program 

Joel Atkinson 

Yvonne Atkinson 

Atlantic Motors Inc. 

Tim and Dawn Atwood 

Shawn Audino 

Barbara Augun 

Scott Aurand 

Austin Jaycees Inc. 

David Austin 

2 0 0 8 



Franklin and Jane Austin 

Automatic Data Processing Inc. 

Avaya 

Avis & Associates, CPA, PC 

Ronald and Eileen Ayotte 

Roman Bachli 

Spencer Bachus 

Pat Bacon-Brandt 

Jack Badford 

Marquis Baeszler 

Steven and Rose Bagby 

Roy and Claudia Baggerly 

Bill and Marilyn Baggett 

Andrea and Charles Bailey 

David Bailey 

David and Ann Baird 

Sam and Priscilla Bajakian 

Samuel and Diana Baker 

Lisa Balboni-Cappello 

Richard and Marcia Balderson 

Paul Baldwin 

Dwight and Aija Ball 

Frank Ballman 

Stuart Bamberger 

David and Merle Barack 

James and Kristi Barker 

Katherine Barlick 

Jacqueline, Eytan and Jean David Barnea 

Christopher and Robyn Barnes 

John and Linda Barnes 

Pamela and David Barnett 

Tina and Stanley Baron 

Patricia and Ronald Barone 

Penelope Barrett 

Barretta Tile and Stone, Inc. 

JoAnne Riley Barron 

Douglas Basler 

Gloria and Thomas Bass, Jr. 

Katie and Chris Batcheller 

Bonny Bates 

Samantha Batson 


Bernie and Julie Battistel 

Annette Baudo 

Kara and Steven Bauman 

Kathrine Beam 

Joyce Bearss 

Richard Beaupre 

Kate and Dan Beaver 

Anna Maria and Todd Beckley 

Teri and Leon Beeler III 

John Behnken 

Ken and Betty Behnken 

Michael and Jeanne Behr 

Linda and Ralph Behringer 

Dennis Belanger 

John and Mary Ann Bellanti 

Nancy and Scott Belleman 

Terri and James Bender 

Tom and Darlene Benoit 

Jennifer and Mourad Bensaid 

George and Virginia Benson 

Gabriela Siegel and Morris Benveniste 

Kristin Berg 

Jack Bernazzani Family 

Carol Lavin Bernick Family Foundation 

Robert Bernstein 

William and Rebecca Berrey 

Monique Bethea 

Antoinette Bevacqua 

Christine and Jeff Bevacqua 

Doug Bittel 

Betty Bitting 

Stephanie Bittle 

Robert and Fern Bitzer 

Joanne Bladel 

Phyllis Blakeslee 

Tom and Diane Blankenship 

Melissa Blundon 

Claribel and Ricardo Bocanegra 

Keith Boeck 

Robert and Beverly Bogen 

James and Dora Bolander


Jennifer and Brad Bolander 

Scott Bolinder 

Dan Bonenberger 

Grace Bonk 

Lida Bonner 

Borchers Supply Inc. 

Todd and Mary Borndale 

Shane and Tami Boroff 

Mario Karpuj and Analia Bortz 

Allan and Kathleen Boucher 

Bill and Ann Boucher 

Jacqueline and Thomas Bowen 

Barbara Bramante 

Brandywine Senior Living 

David and Cathy Braner 

Amy Branham 

Byron and Gretchen Braun 

Samantha Breden 

Laurina Breit 

Christine and Jan Bremmer-Bartlett 

Frederick and Jane Bresani 

James and Dolly Brien 

Ted and Elizabeth Briggs 

Rosa Brigner 

Deborah Brilling 

Leah and Scott Brockway 

Nakita Brooks 

Kimberly Brown 

Robert and Claire Brown 

Frederick Browne 

Tomi Browne 

Del and Patti Bruggeman 

Mauro Brussani 

David and Hilda Bubier 

Rodney Buchbinder 

Sheryl Buchbinder 

Micah Buchdahl 

Kathi Buck 

Sharon and John Buckley 

Darlene and Dwain Buer 

Susan Bumpous 

2 0 0 8 



Suzanne Burgess 

John Burke 

Robert Burkhart 

Phil and Joy Burley 

Shirley Burnett 

Jim Burney 

Clayton and Sue Burton 

Brian and Shelly Burwell 

Bill and Sharilyn Buryanek 

Charles and Margaret Bush 

Kenneth and Yvonne Bush 

Christopher and Eileen Button 

Susan Butts 

Jean Byers 

C & D Transport & Drive Services Inc. 

Kristina Cabel 

Tom and Marilyn Cahill 

Rick and JoNell Caldwell 

Judge Russell and Suzanne Callander 

Camp Spring Lodge BPO 

Robert Campbell 

Thomas and Carol Campbell 

Lynn Campion 

Candlelight Dance Club Inc 

Claire and Craig Cannon 

CAPI Donuts Inc DBA Dunkin Donuts 

Brett Cardonick 

Caring Hands Animal Hospital 

Amy Carpenter 

Kern and Cheryl Carpenter 

David and Joan Carr 

Dave and Sue Carrillo 

Carol Carroll 

Lois Carson 

C E and Deborah Carter 

Peggy and Bud Carter 

Richard and Barbara Carter 

Louis and Sandra Casa 

Christina and Steven Cascio 

Patricia and Steve Casey 

Patrick and Filippa Casey 


Ray and Sharon Casey 

David and Mary Beth Cass 

Kathy and Calvin Cassady 

Susan and John Cassidy 

Bill and Judy Castle 

Thomas and Kathleen Catagnus 

Catalina Pointe Arthritis 

Jennifer Behney and Fabio Ceccarani 

Alfred and Carol Celentano 

Central Michigan Non-Profit Housing 

Rich and Suzanne Ceppos 

Robert Ceppos 

Certified Metal Products Inc. 

CFC-Bangor ME 

CFC-Dayton OH 

CFC-San Antonio 

Stuart Chaffee, PhD 

Bruno et Christiane Chaigne 

Albert and Tuong-Trang Chang 

Judy Chapman 

Jim Chappo 

Carol and Bernard Charles 

Hy and Ruth Chausow 

Barbara Cheney 

Scott and Bethany Cheney 

Patrick and Erica Chilson 

Sharon Chilson 

John and Verna Christopher 

Valerie and Christopher Cirino 

Clark Family Fund of Community Foundation of NJ 

Charles and Barbara Cloy 

Myra Cohen 

Coilcraft 

Paul and Alexis Colianni 

Chuck Collier 

Collins, Einhorn, Farrell & Ulanoff P C 

Larry and Linda Coltrane 

Mike and Alice Coltrane 

John and Susan Comes 

Sean Conley 

Jennifer Baffi and Adrian Connerty


George Connolly 

Gayle and Jan Conroy 

Mary and Ken Conry 

Leonard and Josephine Contrastano 

Donny Conway 

Jane Cooper 

Orrin and Linda Cope 

Rheal and Lucienne Cormier 

Scott Cornelius 

Allan and Dorothy Cornnell 

Dennis and Jeanette Corpman 

Chris and Sam Costa 

Melvin Cotner 

John Coughlin 

Sharon Covaney 

Anthony Covello 

You Young Kang and Alfred Cramer 

Lucille Crawford 

Linda Creed 

Gerald Cregar 

Karl and Sharon Cressman 

Walter and Suzanne Crowell 

Timothy Cullather 

Joseph and Sherre Cullen 

Curious Kids Inc. 

Kathy Curran 

Reagin and Tim Curran 

James and Bronda Curtis 

Catherine Curtiss 

Peter and Henrietta Daale 

Peter Dean and Randee Daale 

Elizabeth and Clifford Dainty 

Rene and Janet Damin 

John and MaryAnn Danese 

Michael and Hoa Thi Dargon 

Julie Davidson 

Tom and Thelma Davidson 

Jason and Heather Davis 

Jim and Toni Davis 

Lori and Bobbie Davis 

Ray and Sherry Davis 

2 0 0 8 



William Davy Family 

Frank and Carole De Francesco 

Ann De Pierro 

Henry and Dorothy Dechert 

David Defrees 

Ann Deg 

Beth and John Deindorfer 

Stan and Estelle Deitch 

Brenda Dekkers 

Jennifer Bevacqua Delaconcepcion 

Delaware Valley Rose, LP 

Dominique and Andre Deleage 

Delex Plumbing Inc. 

Dell Direct Giving Campaign 

Kelly and Kevin Delongchamp 

Anthony Deluca 

Phyllis and Nicholas Delvecchio 

Germaine Deno 

Kari Denson 

Louis and Mary Ann DeSarno 

Judith Desrochers 

Adrienne and Stan Deutsch 

Robert and Lauren Di Lorenzo 

Paul and Patricia DiCola 

Charles and Geraldine DiCosimo 

Mary Anne Diehl 

Lisa Difelice-Levenson 

Sandie Diggs 

Carlo and Aleli Dimaisip 

Dennis and Sally Dinan 

Hal and Sally Dingley 

RaDora Dinnan 

Hope and John Disney 

Sandy and Frank Ditta 

David and Carolyn Dixon 

Ann Dock 

David and Sharon Doherty 

Julie and Jeff Doherty 

Susan and D S Donegan 

Jackie, Ken and Lorenzo Donohue 

Mike and Sharon Doredant 


Barb and Don Dorn 

Edward and Veda Doughty 

Charles and Laura Dovale 

James and Michele Doyle 

D-P Tools, Inc. 

David Dragul 

Dan Driscoll, MD, PhD 

Rick Drucker 

Jim and Debbie Duane 

Todd Gerba and Karleen Duca 

Ross and Jane Dudley 

Doreen Duffy-Erhardt 

Larry Dunagan 

Laura and Glenn Dunn 

Henk and Hanna Dunnewold 

Margaret Durso 

Michelle Dutcher 

Bill and Nancy Dvorak 

Eastern Massachusetts C F C 

Arthur and Judy Edell 

Paul and Sandra Eichelberger 

Tracy Eichelberger 

Elizabeth Elkovich 

L. A. and J. F. Ellingson 

Debra Ellis 

Maureen and Jeff Emmerso 

Stephen and Frances Eppig 

Mark and Kathy Evans 

Jill and Robert Fabian 

Laurie and Jon Factor 

Robert Fagan 

Joann Falciani 

Rajab and Josephene Farahmand 

Farm Foundation 

Garrett Farnsworth 

Michael and Mary Farrand 

Betty and Lyman Farrar 

Dennis and Karen Farrell 

Rick Favret 

Laura and Kevin Feder 

Russell Feekes


Jeff Fender 

Erica Fensom 

Thomas and Deborah Feo 

James and Robin Ferguson 

Troy Ferguson 

Fidelity Charitable Gift Fund 

Phillip and Christine Field 

Ilene Fine 

Elliot Finkelstein 

Bud and Caroline Finley 

Salvatore and Shannan Finocchiaro 

First State Bank 

Rogers Firth 

Hayden and Erika Fisher 

Garry and Maureen Fiske 

J F and Mary Flaherty 

Carol Fleming 

Denise and Bill Fleming 

Tom Fleming 

Richard and Ellen Fletcher 

Floyd's 99 Colorado LLC 

Anthony and Ellen Foglia 

Patricia Foley 

David and Kristy Folkwein 

James and Monika Folmer 

Foot Health Centers PA 

Forest Hills Mens Senior Golf 

Foshee Management Company LLC 

Carol Foster 

Michael Fox and Staff 

Christy Fox 

Michael and Mindy Fox 

Angela Francavilla 

David and Mindi Freedman 

Stephen and Madalyn Friedberg 

Michael and Cheryl Friedenberg 

Bill and Kathleen Friend 

Heinrich and Anna-Maria Froehlich 

Raymond and Phyllis Fuja 

Robert and Tabitha Fuja 

Russell Fuja 

2 0 0 8 



Libby and Rob Fuller 

William Fulton 

Maryanne and Edmund Funai 

Robert Funk 

Greg and Tammy Galloway 

Ann Gamble 

Vince Garcia 

Garden State Rotary Club of Cherry Hill 

John and Ann Gardiner 

Christy and Josh Gardner 

Laura and Danny Garner 

Rose and Miguel Garrido 

Elizabeth Gavigan 

Cheryl Gawronski 

Susan Gawronski 

Lawrence Genstil 

Sue Genthner 

Sheila George 

Georgetown Women in Business 

Matt Gershner 

Theresa Gesell 

Henry and Joan Gianatasio 

Katherine Giddens 

Edward and Janine Gill 

Barbara Gillen 

Penny and Sean Gillespie 

Martin and Gladys Gillette 

Dorothy Gilpatrick 

Dayle and Darla Gilson 

Steve and Sandra Ginn 

Harriet Girard 

Pete and Gayle Girard 

Martha and Gary Girdaukas 

Girl Scout Trooop #5117 

GlaxoSmithKline Foundation 

Jennifer Glover 

Goddard Parent Organization 

Carol and Dave Goettlicher 

Jeffrey Gold 

Hal and Bernice Goldberg 

Arthur and Joan Goldman 


Greg and Robin Golub 

Paul and Anita Golub 

Marion Goodman 

GoodSearch 

Donald and Peg Goranson, Jr. 

Nick and Carolyn Gordon 

Robert Gordon 

Julie Gottschalk 

Linda and William Gourash, MD 

Barbara and David Gow 

John and Laurie Grabenstein 

Shelly and Eric Graham 

Adrian Gram 

Grand Rapids Industrial Process Service Inc. 

David and Julie Granson 

Jim and Kathy Gray 

William Gray 

Lisa and TJ Graziano 

Greater Hartford Area CFC 

Morris and Ruth Green 

Wes Green 

Mark Greenberg 

Ellen and Gary Greenspan 

Louise and Sidney Greenswag, RN, PhD 

Robin and Ken Grey 

Charles Griffith 

Dwight and Jane Griffith 

Ed and Kay Griffith 

Janice and Paul Griggs 

Robert Griggs 

Susan Griggs 

Donald and Glenda Grimm 

Doris and John Groenboom 

Marie and James Grosso 

Ann and Paul Grussing 

Phil and Becky Gulling 

Jean and Joseph Gunning 

Lori and Michael Guthrie 

Nancy and Robert Haeni 

Florence and Albert Hafner 

Amber and Thomas Haggard


Kevin Haggard 

Billy Haile 

Peter and Arlene Haleas 

Jason and Melissa Hall 

Steven and Margaret Hall 

Geneva Hallett 

Halligan Painting Inc. 

John Halter 

Bill and Marolyn Halverson 

Pat and Dick Hamel 

Hamilton P B A Local 66 

Harlan and Melba Hamlin 

Jeanne Hanchett, MD 

Harold Handler 

Ladonna and Roy Hanks, Jr. 

Casey Hans 

Martha Hansen 

Bill and Vonda Hardcastle 

Ronald and Ellen Hardin 

James and Peggy Hardy 

Ryn Harman 

Andrew Harmer 

Bill Harmer 

Nancy Harmer 

Dan and Beth Harper 

Benjamin Harris 

Donna and Anthony Harrison II 

Cindy Harrison 

Lori and Nathan Harry 

Vern and Lisa Harshman 

Francis and Joan Hart 

Mike and Linda Hartnett 

Jo and Floyd Hatcher 

Charles and Marlene Havrda 

Howard and Mary Elaine Hayden 

Jennifer Hayes 

James Headley 

Roger Healy 

Arnold Hearn 

Heart of West Michigan United Way 

Heartland 

2 0 0 8 



James and Jo Ann Heck 

Thomas and Maria Hedrick 

Andrew Heeren 

Patricia and Roy Hegedus 

Lucia and Henry Heinold 

Barbara and Ken Henderson 

David and Cheryl Henderson 

Edward and Diane Henderson 

Marjorie Henderson 

Mike and Diane Hennessy 

Thomas Henriksen 

Ozmer Henry Jr., MD 

William and Angela Hensler 

Robert Henson 

Jacqueline Herbert 

Randy and Trudy Hermans 

Vanessa Hew 

Rayna and Stanley Hicks 

Jennifer Hill 

Helen Hilling 

Willie Hinson 

Jerry and Jeannie Hipp 

Ronald and Ethel Hirshon 

Carol Hobbs 

Jean and Lowell Hobrock 

Eileen and William Hobson 

Tim Hobson 

William Hodgkinson 

Edward and Diane Hoke 

Scott and Michelle Holbrook 

Howard Holcomb 

Dennis and Jan Holland 

Arthur Hollenbach 

Bryan Hollenbach 

Michael Hollenbach 

Rodney and Cindy Holmes 

Jim and Wanda Holstein 

John and Sharon Holthoff 

Leslie Holthoff 

Meghan Holthoff 

Kent Holwadel 


Holy Spirit Catholic Church 

Angela Hoover 

Michael Hoover 

Christina and Scott Hopkins 

Harold and Tammy Hopkins 

Pete and Carolin Hopkins 

John and Pat Horner 

Robert Horowitz 

Pamela Hostetler 

Jenyce Houg 

Martha Houser 

Volena Howe 

Douglas Howie 

Holly Hoxeng 

Hubble's Body Shop Inc 

Jerry and Mary Huffman 

Agnes and Thomas Hughes 

Sally and Patrick Hunnicutt 

Caryn and Richard Hunt 

Robert and Sandy Hunt 

James and Laura Hunt, Trustee 

Yvonne Hunt 

Jeannine Hurrish 

Richard and Helen Iacabucci 

Kristin Ianni 

Dennis Imhoff 

Julie Imholt 

Independent Charities of America 

Mary Ingalls 

Bob and Edna Inman 

Iowa Lamb Corporation 

Nadeem Iqbal 

Ireton Veterinary Services Inc 

Nancy and Olivia Ivankoe 

William Iversen 

Bruce Jacobsen 

Debbie and Nathan Jacobus 

Stephen and Tamera Janedis 

Sandra Jarrett 

Marvin and Yvonne Jassie 

Ellyn and David Jeager


Daniel Jeffery 

Andrew and Gabriela Jeffery 

Phyllis Jeffery 

Kim and Gregory Jehlik 

Glenn Jerro 

Karen and Tim Jobe 

Richard Joblon 

Johasz Precast Inc. 

Christopher Johns 

Charlene and David Johnson 

Chris and Lisa Johnson 

Eric and Julie Johnson 

Janet and David Johnson 

Keith and Donna Johnson 

Matthew and Jamie Johnson 

Bill and Jude Johnston 

Anna Jones 

James Jones 

Jennifer and Ben Jones 

Barbara Cleveland and Stanley Jones, Jr. 

Lisa Jones 

Patricia Jones 

Laura Juliano 

Joe Kaczor, Jr. 

Kevin Kahn 

Art and Beth Kane 

Lois Kane 

Connie Karcher 

Norm and Charlotte Karin 

Sandra Karlson 

Connie and Carl Kates 

Elaine and Stanley Katz 

Sean and Patricia Keating 

Thomas and Marguerit Keating 

Linda and Michael Keder 

Robert and Sue Keen 

Charles and Eleanor Keenoy 

Lynn Keller 

Patrick Kelley 

Jim Kellogg 

Karen Kemp 

2 0 0 8 



Joseph and Susan Kempter 

Jeffrey and Ruth Kennedy 

Rev. Dan Kenner 

Al and Linda Kennett 

David and Tammy Kenney 

Shawn Kilgore 

David and Nancy Kimmel 

Dara and Garret King 

Jason King 

Jennifer and Joseph Kinn 

William Kirchhoff 

Laurie and Paul Kitchin 

Robert and Alexandra Klas 

Kenneth and Dorothy Kleckner 

Douglas Klein 

Les Klyn 

John and Teri Knowles 

Lynne Kobayashi 

David and Melissa Koch 

James and Rita Koerber 

Keith and Jill Kofsky 

Gerald and Karen Kolschowsky Foundation Inc 

Jeff and Shelli Kooi 

James and Mary Koopmans 

Randall and Cynthia Koopmans 

Kraft Foods Matching Gifts Program 

Angela and Chris Krambeer 

Linda and Randy Kramer 

Stacy and Ryan Kramer 

Stanley Kramer 

Melanie and Matthew Krauchunas 

Jeanne Krautwurst 

Florence and Tony Kreacic 

Mark Krinsky 

Jessica and George Kruse 

Judith and Luis Kubichek 

Jon and Debbie Kuchenberg 

Carolyn and George Kuhl 

Kulzer & Dipadova 

Carol and Jack Kumer 

George and Lee Ann Kuntz 


Steve Kutner 

Gary and Linda Kyger 

Galen and Anne LaBree 

Genevieve Currie and Yvon LaCour 

Susan and Brad Laffrey 

Mary Lagana 

Lake County IL CFC 

Lynne LaMar 

Colleen and Ken Lamb 

Kimberley and Robert LaMountain 

Lester Langhans III 

Prentice Lantzer 

Virgilio and Pinky Lao 

Marianne Larkins 

Royce Larsen MD 

Bill Larsen 

Jodi Laufgraben 

Robin Lavin 

Matthew and Carol Lawlor 

Gerry and Margot Lawrence 

John and Betty Lawther 

Charles Layton 

John and Christine Leahy 

Michael and Patricia Leahy 

Tara Ann Leahy 

Tom and Ann Leahy 

David and Randy Lebedoff 

Kelly and Yves LeBel 

Raoul and Claire Ledoux 

Henry and Margaret Lee 

Lehman Brothers 

Robert and Wauneta Lehman 

Ben and Janis Leightman 

Ray and Ida Leightman 

David and Susan Leitten 

Joseph Lembeck 

Lori and John Lens 

Hope and Nelson Leonard 

Paul and Catherine Leonard 

Bernice Leracz 

Michael and Renee Leroux


Robert and Bonita Lessig 

Ronald Lessnau 

Edwina Letcher 

Saundra and Fred Levan 

Aimee Levin 

Lawrence and Lynn Levine 

Edythe Levitt 

Mike and Karen Lewis 

Nancy Lewis 

Robert and Sherard Lewis 

John and Carol Lietzow 

Laura and Russell Lilac-Tate 

Chia-En Lin 

Dennie and George Lindsey 

Tim and Carol Lindsey 

Jeff and Jacki Lindstrom 

Patricia Linge 

Teri and Michael Lipsitz 

Sandra List 

Kim Littell 

Carole and Doy Lively 

Samuel and Helene Lizerbram 

John and Caron Lizzadro 

Michael Lober 

Sue Lobrano 

Mary Ann Lockhart 

Jaime Lomas 

Lawrence and Bernice London 

Ruth Long 

Chester and Roberta Lonnquist 

Janis and Robert Loper 

Lauren and Kristin Loper 

Rose Lopez 

Brian and Mary Lord 

Eileen Lord 

Rebecca and Jason Loupe 

Brett Love 

Thomas and Sheryl Love 

Georgene and Ralph Lowe 

Stephen and Connie Lowe 

Gene and Donna Lowery 

2 0 0 8 



Larry Lynam 

Luther and Nancy Lynn 

Jerrod and Wendy Lynott 

Edward Lyon 

Jo Ann Lyon 

Mark and Barbara Lyons 

Frank and Edith Lysy 

M.U.S.T. - Mgmt & Unions Serving Together 

Priscilla and David MacInnis 

Elody Mackey 

Suzette LaVigne and Eric Macks 

Ralph Magalee 

Michael Magee 

Elizabeth Siccone and Salvatore Maglione 

Kevin Maguire 

Joan Mahoney 

Tara Ann and Michael Mahoney 

Jason and Carolyn Malanda 

Ed and Rose Maloy 

Sally and Tony Mancheno 

Judith and Leonard Mandel 

Reva Manning 

Theodosia Mantas 

Sheldon Mantelman 

Edward and Rhonda March 

John and Lucille Marchese 

Alice Marek 

Jeanne Markle 

Barry and Lisa Marks 

Bill and Terri Marks 

Robert and Lynn Markus 

Stephen Markus 

Janet and Vincent Marolda 

Clarence and Sonja Marshall 

Angelo Martello 

Dennis and Jacquellyn Martin 

David and Cindy Martino 

Florence Martinson 

Catherine Masi 

Mason Mix Inc. 

Diane Masterson 


Susan Matesevac 

Candy and Jeffrey Mathews 

Amy Mathis 

Brian and Stacy Mattioni 

Joseph and Mary Ellen Matts 

Marion Mattucci 

The Matyas Family 

Carolyn Maye 

MBIA Foundation Inc. 

Ann and John McAdam 

Shawn and Chris McCandless 

Betsy McCarthy 

Erin and Patrick McCarthy 

James and Barbara McCarthy 

Joanne McCarthy 

Helen McCleary 

Patrice McCleary 

Karen McCoy 

Robert and Deborah McCracken 

Dolores McCullough 

Lorri and Paul McDaniel 

McDonald & Rogers LLC 

Bridget and Randy McDonald 

Lilian and Marvin McDonald 

Sean and Katherine McDonald 

Linda McDonough 

Patrick McEvoy 

Benice McGee 

Linda McGee 

Martin McGraw 

Mary McGreal 

David and Betty McHugh 

Pauline McIlrath 

James and Linda McKibben 

Dorothy McLaughlin 

John and Helen McLaughlin 

Mark Schubin and Karen McLaughlin 

Elizabeth and Dave McLean 

Joe and Joanna McMahon 

Joseph McManus 

Sean McMenamin


Ronald and Sue McNeil 

Austin McNichols 

Edward McNulty 

Thomas and Patricia McRae 

Gloria Means 

Roy and Mable Meeks 

Ryna and Ken Mehr 

Thomas and Kelly Melle 

Angela Mellon 

Jeff Mengel 

Richard and Lisa Menti 

Wendy Wolf and Mitchell Menzer 

Becky Mercer 

Merck Partnership for Giving 

John and Karen Meslow 

James and Annette Messinger 

Robert Metzger 

James and Kim Mewhirter 

David Meyers 

Erik Meyers 

Barbara and Arthur Miceli 

Michele P Kukla, PA 

Carol Michels 

Mid-Atlantic Automation 

Middlesex City Assistant Prosecutor's Office 

Joyce Miller 

Tina Miller 

Wayne and Marcia Miller 

Charles Mills 

Ellen and Johnny Mills 

Marianne and Joseph Mione 

Missionfish 

Gerald and Janice Mitchell 

Graham Mitchell 

Darrick Mix 

Terry and Debbie Mleczewski 

Scott and Dana Mol 

Dawn Monge 

Maria Monge 

Anthony Mongo 

Louis and Tamsin Monnoleto 

2 0 0 8 



Marc Montini 

John and Jean Mook 

Vanessa Kim and Isaac Moon 

Joan Moore 

Kevin Moore 

Mark and Margaret Morehouse 

Paul and Andrea Moreschi 

Maxine and Gregory Morris 

Cynthia Morrisroe 

Scott Morse 

Fran Moss 

Heather and Carl Muckenhirn 

Robert and Darlene Mukoda 

George and Nancy Mullen 

Sean Mullen 

Karen Mullikin 

W B Mullins 

George and Catherine Mulry 

Brian and Gail Murphy 

Marte and John Murphy 

Michael Murphy 

Cathy and Steve Muscara 

Ann Myers 

Cathy and Stephen Myers 

Edward Myrick 

Ben and Raina Nadler 

Ron and Lee Ann Naeve 

Henry and Karen Naisby 

Dominic and Melissa Natale 

National Nail Corp 

George Natonick 

Clara and Delano Naylor 

Susan and Garry Neal 

Karen and Charles Neff 

Claudio and Dilsia Negron 

Bob Nelson 

Darrow and Renate Nelson 

Mary Nelson 

Prudence and Tom Nelson 

Thomas and Prudence Nelson 

NEMO Tile Company Inc 


John and Cindy Nicotra 

Paul and Stephanie Niedermeyer 

Joyce Nokleby 

Charlene Noland 

Doug and Linda Noll 

Charles Nolte 

Northern Screen Printing & Enbroidery 

Tina and Steven Nowell 

Victor Nuessle 

NYC Combined Federal Campaign 

Terry Oakes 

Oakland Township Firefighters Assoc 

Patrick and Shawna O'Brien 

Bernie and Millie O'Connor 

Charles O'Connor 

Gail O'Connor 

Christy O'Donnell 

Michelle O'Halloran 

Adrian and Nancy O'Leary 

Jan and Renata Oliszewicz 

Joe and Cyndi Olivacz 

Diane Olivo 

Barbara Oplinger 

Kory Oplinger 

Jim and Andrea Oppy 

Jeanette and Jim Orahood 

Sarah and James Orahood, Jr. 

Ray and Ruth Organ 

Mirtha Ospina 

Geraldine Ostrov 

Tom and Jeanne O'Sullivan 

Thomas and Mary Otte 

Jerry and Lisa Otto 

Todd and Kelly Overman 

Robert Owen 

P. B. A. Local 214 

Eleanor and Neil Pagano 

Kathleen and Ralph Paige 

Dorothy Papsadora 

Victor and Elaine Paquet 

Lloyd and Alice Parcell


Frank Paris & Family 

Ross Park 

Denise and Jason Parkrosz 

Robert Parrillo Family 

Raul and Debbie Pastran 

Chris and Shelby Pate 

Arvind and Suman Patel 

Alison Patient 

William and Bonnie Patient 

Patrick Breen Masonry & Concrete LLC 

Ann and Robert Patterson 

Lamar and Barbara Paul 

James Paulson MD 

Wilma Peabody 

Jill Peach 

Ed and Patricia Pelszynski 

Cathi Pena 

Angelique and Fred Penaflor 

Amy Perchick 

Mort and Joy Perchick 

Sandra Perchick 

Steve and Verla Percy 

Joseph Perrotto 

Harry and Muriel Persanis 

Personal Assistance Services of Colorado 

Ida Peskin-Wollock 

Stephen Petrakis 

Fran and Kay Pfeiffer 

Mel and Chris Pfeiffer 

Pfizer Foundation Matching Gifts Program 

Pfizer United Way Campaign 

Jane Phelan 

David and Elizabeth Phillips 

Larry Phillips 

Mary and Joe Pichirallo 

Pam Pick 

Don and Roylene Pickard 

Pickner Law Office, P.C. 

Thomas and Allison Pierson 

David and Lesley Pincus 

Daniel and Kim Pinda 

2 0 0 8 



Lisa Pirochta 

Saeed Pirooz 

Piszel Chiropractic Clinic 

Sheree Pitchford 

Aaron Plaisted 

Sherri and Jeff Planton 

Jerry and Margaret Plotke 

Lyle and Ronna Podber 

Sharon and Gordon Pohn 

Porter Funeral Home 

Jeff and Kari Porter 

Todd Porter 

Kimberly and Evan Postal 

Carolyn and Joseph Potoff 

Peter and Joy Poulos 

Jim and Regina Powers 

PR Construction 

Marlene Pratto 

Ken and Ruth Prettyman 

Ava Price 

Marguerite Priest 

Fred and Barbara Prince 

Private Collections, Inc. 

Elizabeth Prochazka 

James Pryor 

Laurel Prysiazny 

Michael Pullen 

Linda Pulvers 

Gerald and Helen Punches 

Richard White and Beverly Purrington 

Kevin and Joy LeMar- Pyles 

Pyramid Products 

Qdoba Restaurant Corporation 

Quarterdeck Restaurant 

Tom Quinlan 

Kerry and Tyler Quinn 

Mary Quinn 

Paul and Bernie Quinn 

Irene Quisenberry 

Janis Raber 

Paul and Katherine Racette 


Katherine Radaz 

Caitlin and Michael Raiger 

Dawn and Bryan Rakowski 

Harold and Diane Ranck 

Mark and Sheryl Ranck 

Dawn and Christopher Randolph 

William and Barbara Ranieri 

Rapid Valley Sanitary District/Water Service 

Rare Communications Inc. 

Adam and Rebecca Ray 

Gregg Redd 

Jeannie Redmond 

Steve and Shari Rehder 

Jacqueline Reid 

Thomas and Carolanne Reid 

Daniel and Elizabeth Reidy 

Colleen and Michael Reilly 

Ken Reinking 

Jerald Reisman 

Ralph and Ruth Reitmeyer 

James Reitz 

Troy and Leahann Renck 

Keith and Leslie Renneker 

Michael Parker and Megan Rhyne 

Henry Rianhard 

Anthony Riccio 

Anthea Richardson 

David and Theresa Richardson 

Donald Richardson 

Betty Richmond 

Charles Ridgway 

Rigid Steel Construction LLC 

Robert and Joann Riha 

Richard and Deborah Rikess 

Jim and Mary Ellen Riviello 

Severino and Catherine Roberto 

Courtney Roberts 

Willliam Roberts 

Mary Rodino 

Richard and Jo Rodrick 

Carla Roehner


William and Jean Roenigk 

Daniel Romero 

Elizabeth Roof 

Arlene and John Rose 

Harry and Carol Rose 

Jane Rose 

Jason and Alison Rose 

Waverly Rose 

Sonia Rosenbaum, Ph.D. 

Richard Rosenblatt 

Larry and Jan Rosenfield 

Ruth Rosenstadt 

Daniel and Kristine Ross 

William and Tina Rosso 

Ryan and Kristen Rothacker 

Leonard Rothenberg 

Steven and Elaine Rovner 

Peter Roy 

Arlen and Elaine Rubin 

Jeff Ruden 

Linda Ruen 

Lisa and Jeffrey Ruffner 

Andrew and Miriam Ruffolo 

Mike and Renee Ruhl 

Erick Rupprecht DDS, PLLC 

Linda and Jim Rustin 

Hilary Ryder 

Natalie Saathoff 

Joseph Sagona 

Brendt Sailer 

Saint Joseph Mercy Health System 

Rose Sakurai 

Andris and Patricia Salka 

Richard Salomone 

Ellen Sambrano 

Alberto and Nancy Sanchez 

Beatriz Sanchez 

Rick and Sara Sandbulte 

Nancy and Bob Sanderson 

David Sandri 

Sanford Health 

2 0 0 8 



Rolf and Patricia Sartorius 

John Robert Sasso Foundation 

Bob and Brenda Sattelberger 

James and Raymah Satterly 

Dorothy Sattler 

Anthony Savarese 

Ron and Marilyn Schaaf 

Josh and Lisa Schactman 

Gretchen Schafft 

Barry and Linda Schaye 

Ann Scheimann, MD. 

Edward and Kay Scherer 

Ina Schertz 

Leo and Kathy Schertz 

Rita Schertz 

Betty Schiff 

Jane Schiff 

Terri and Howard Schlange 

David Schlendorf 

Philip Schmidt 

Theodore and Elizabeth Schmidt 

Missy Schmitz 

Mary Schneider 

Barbara Schnepper 

Sandra and Ken Schoen 

Patricia Schoonover 

Robert and Charisse Schuerman 

Andrew and Leslie Schultz 

Lisa Schumacher 

Louis and Judy Schutz 

Ted Schwab 

Chari Schwartz 

Lara and Eric Schwartz 

Ron and Helga Schwarz 

Carolyn Schweizer 

Ryan Schwiesow, D.C. 

Nicholas and Susan Scoppetta 

Scott T. Bosgraaaf Trust 

Ashley Scott 

Frank and Julie Scott 

Jennifer Scruggs 


SE Michigan Area CFC 

Diane and Rob Seely 

Owen Segall 

Pearl and Allan Segall 

Rick and Caryn Segall 

Robert Segall 

Edward Seibel 

Lisa and Leon Seidman 

Ann and Jerry Seigel 

Todd Shaffer 

Donna Shahbaz 

Damien Shane 

Neal and Judith Shapiro 

Margi Shaw 

Lowell and Lynn Sheinkin 

Stephen Shewchuk 

Janet Colturi and Troy Shingleton 

Michele and Troy Shingleton 

David and Jane Shoemaker 

Shorter Avenue Baptist Church 

Ellyn Jeager and Mollie Shron 

Elizabeth Siccone 

Catherine and Aldo Siciliano 

Giovanni and Deborah Siciliano 

Pam Siefert 

Barbara Siegfriedt 

Mark and Maria Siegfriedt 

Bob and Debbie Silverstein 

Nicholas Simonis, Jr. 

Kenneth and Jessica Simonsen 

Gladys Simpson 

Holly Sims 

Martin Sinclair 

Henry and Susanne Singer 

Stewart and Wendy Singer 

Robyn Sippel 

Elizabeth Skinner 

Judy and Bart Sklar 

Bill and Claudette Slaughter 

George Slifcak 

David and Gloria Slightom


Nancy Slye 

Christopher Smedley 

Carl and Cheryl Smith 

Eugene Smith 

Fay Smith 

Jamieson and Komal Smith 

Jerry and Florence Smith 

Jonathan Smith 

Charles and Constance Smith, Jr. 

Leo Smith 

Michael Smith 

Norva and Bobby Smith 

Peter and Lucia Smith 

Mark and Bethany Snow 

Kelly Soendker 

Edwin and Theodora Sojka 

Soltec USA Inc. 

Ralph and Cathy Sorice 

Lee Ann and Roger Souders 

South Atlantic Concrete Products 

Mitchell and Toba Spector 

Clinton and Mary Speiser 

Don Oliver and Diane Spencer 

Jennifer and Kenneth Spencer 

Early and Jackie Spiars 

Joanna Spiars 

Neal and Angela Spradlin 

Keith Spriggs 

John and Paula St. John 

John and Debbie Stallings 

Harry and Marlyn Starkman 

Kathryn Stazzone 

Gloria Steadman 

Robert and Diane Stehouwer 

Tammi and Gary Steinberg 

Damon Stephens 

William and Mary Stewart 

Adam Stillo Sr 

Rick Stimac 

Boyd and Peggy Stimpson 

Sally Stockton 

2 0 0 8 



Robert and Anny Stoeck 

John and Joan Stoner 

Eric and Tammy Stratton 

Meribeth and Vinson Straub 

Sandy and Brian Streeter 

Roger Stretton 

James and Theresa Strong 

Kathy Stroup 

Bernard and Amy Stubbs 

Sherry Sturgis 

Peter and Mary Suarez 

Lisa Sullivan 

Mathias and Connie Sullivan 

David Swanson 

Ronald and Sandy Swanson 

Shehla Syed 

Wendy Symalla 

Cindy and Matt Szapacs 

Ed and Linda Szapacs 

Margaret and Gregory Sznaj 

Leonard and Maryann Szyper 

Michelle Taggart 

Roger and Katherine Tappen 

Arlene Taraschi 

James and Karen Tarbell 

Julie and Gary Tate 

Suzanne Tate 

Antone and Laura Tatooles 

Karin and Steve Taylor 

Richard Taylor 

Troy and Heather Terranova 

Douglas and Wanda Terrell 

Crystal Testerman 

The Cameron Foundation 

The Egg and I 

The McGraw-Hill Companies 

The Physician & Midwife Collaborative Practice 

Jerry Voith and Lynn Thogersen 

Allan and Ingrid Thomas 

George and Carole Thomassy 

Kurt and Linda Thompson 


Gerad Thorell 

Stanley and Tracy Thorp 

Elizabeth Tietgen 

Angela and Greg Tipton 

Don and Thelma Toby 

Donald and Thelma Toby 

Peri Todd 

Anthony Toner 

Marilyn Torosian 

Rhett and Pam Tranbarger 

Cheryl Travelstead 

Frances Traver 

Karen and Michael Trier 

Jody Trinchet 

Truesdell Oil, Inc. 

Jennifer Tschumakow 

Betty Turcotte 

Larry and Lisa Turner 

Phyllis Turner 

Ralph Turner 

Henry and Janet Underwood 

Lisa and Tom Underwood 

Powell and Joane Underwood 

United Way for the Greater New Orleans Area 

United Way Metro Chicago 

United Way of Central Indiana Inc 

United Way of Metropolitan Atlanta, Inc. 

United Way of Northeast Florida CFC 

United Way of Palm Beach County Inc 

United Way of Southern Illinois 

United Way of The National Capital Area 

United Way-PCFO CFC 

Darren and Donna Unterberger 

Julaine Untereker 

Phyllis Uzendowski 

John Vaghini 

James and Wava Van Becelaere 

Betsy and Jeff Van Loben Sels 

Lisa and George Varndell, Jr. 

Michael Vastano DDS 

Veltman Investment Services


William Verity 

Maurice and Helen Vermeulen 

Ron and Rita Vermeulen 

Deborah Vesper 

Viera Suntree Hawks 

Don and Betty Vincent 

Francis Vincent 

Patti Vincent 

Marion and Jorge Vizoso 

Margaret and Ronald Vogrin 

Edward and Andrea Wachter 

Bill and Joan Wade 

Robert and Cynthia Wainscott 

Marjorie and Robert Walcutt 

Karen and Stuart Wallet 

Bill and Donna Waln 

Deb Walsh 

Lisa and Kevin Walsh 

Water Pointe Realty Group of Jupiter, Inc 

B J Waterman 

Rocky and Alice Waterman 

Lenora Watson 

Richards Watters 

Wayne F. and Barbara B. Miller Family Trust 

Gary and Carolyn Weakly 

Susan Wease 

Joan Wegner 

Eleanor and Richard Weiner 

John and Nancy Weingart 

Joseph and Kara Weipz 

Weiser Farms, Inc. 

Richard Weiss 

Wellpoint Associate Giving Campaign 

Wayne and Karen Wendel 

Roger and Sara Wenner 

Barbara Wentworth 

Michael and Patricia Werle 

Charles West III 

Karl and Denise Westenfield 

Lanette Westfall 

Robert and Beverly Wetherbie 

2 0 0 8 



Marge Wett 

Sarah Whetstone 

Austin and Susan White 

Brian, Lara and Kaylin White 

Betty and Wanda Whitten 

Irent Whitten 

Hank and Ronaele Whittington 

Brant and Margaret Wigger 

Ron Wilkinson 

Carol and Jerry Williams 

Carrol and Sally Williams 

Margot Williams 

Nahla Harik-Williams and Christian Williams 

Bob Williamson 

Howard and Genevieve Willis 

Jean and Chuck Willoughby 

Harry Wilson 

John Wilson 

Ralph Winslow 

Bruce and Karen Wismer 

Michael Wisnom 

Phyllis Wisot 

Elwood and Mary Jane Wissmann 

Sherry Wittry 

May Woei 

Barbara Wolf 

Patrick and Melissa Wolfe 

Paricia Wolfer 

Ron and Rowene Wolfer 

Joyce and Jonathan Woll 

Janice and Jim Wollam 

Darlene and Al Wong 

Yeanna Woo 

Sandra and Sam Wood 

Heather and Steve Woods 

Calla Jean Wright 

David Wyatt 

Brian and Noreen Wynne 

Gerald Yass 

Everett and Sharon Yore 

Ruthie and Sandy Yosowitz 


Jeannette and Thomas Young 

Stephen and Peggy Young 

Dwight and Dawn Youngkin 

Alex and Alexa Yu 

Leora Zabusky 

Lori and Richard Zachmann 

Martin Zak 

Michael Zamore 

Sean and Thouraya Zapara 

Alice and Herb Zarov 

Lisa and Gregory Zeiter 

Miguel Zevala-Allen 

Mary K Ziccardi 

Linda Zick 

Judith Zocchi 

Thomas Zook 

================================ 

Due to space restrictions, we were unable 

to list donations less than $100. Thank 

you very much for your support of 

PWSA (USA)! 

Please call the office to notify us of any 

corrections to the list of donors. 

================================

2 0 0 8 

Board of Directors and Advisory Boards 

Directors and Officers 

Co-Chair—Carol Hearn, Plymouth, MN 

Co-Chair—Ken Smith, Pittsburgh, PA 

Secretary—Julie Doherty, Tallahassee, FL 

Treasurer—Bert Martinez, Bradenton, FL 

Janice Agarwal, Zionsville, IN 

Michael Alterman, Atlanta, GA 

Jamie Bassel, New York, NY 

Dan Driscoll, PhD., M.D., Gainesville, FL 

Linda Gourash, M.D., Pittsburgh, PA 

Kerry Headley, Upper Arlington, OH 

John Heybach, Ph.D., Chicago, IL 

Steve Leightman, Cherry Hill, NJ 

Carolyn Loker, Kalamazoo, MI 

Jackie Mallow, Oconomowoc, WI 

Mark Ryan, Newhall, CA 

Mary K. Ziccardi, Cleveland, OH 

Scientific Advisory Board 

Chair—Merlin G. Butler, M.D., Ph.D., Kansas Univ. Med. Center, Kansas City, MO 

Chair Emeritus—Vanja Holm, M.D., University of Washington, Seattle, WA 

Suzanne B. Cassidy, M.D., U.C.I. Medical Center, Orange, CA 

Joe Donnelly, ED.D., University of Kansas, Lawrence, KS 

Elisabeth M. Dykens, Ph.D., Vanderbilt University, Nashville, TN 

David Ledbetter, Ph.D., Emory University School of Medicine, Atlanta, GA 

Phillip D. K. Lee, M.D., EMD Serono Inc., Rockland, MA 

Harriette Mogul, M.D., M.P.H., New York Medical College, Valhalla, NY 

Sue Myers, M.D., St. Louis University, St. Louis, MO 

Robert Nicholls, D. Phil., Children’s Hospital of Pittsburgh, Pittsburgh, PA 

Ann Scheimann, M.D., Texas Children’s Hospital., 

Baylor College of Medicine, Dallas, TX 

Rachel Wevrick, Ph.D., University of Alberta, Edmonton, Alberta, CN 

Barbara Y. Whitman, Ph.D., St. Louis University, St. Louis, MO 

Clinical Advisory Board 

Chair—Daniel J. Driscoll, Ph.D., M.D., UF Health Science Center, Gainesville, FL 

David M. Agarwal, M.D., IN University School of Medicine, Indianapolis, IN 

Moris Angulo, M.D., Winthrop University Hospital, Mineolo, NY 

Ivy Boyle, M.D., Bellefaire JCB, Cleveland, OH 

Janice Forster, M.D., Pittsburgh Partnership, Pittsburgh, PA 

Linda Gourash, M.D., Pittsburgh Partnership, Pittsburgh, PA 

Bryan Hainline, M.D., Ph.D., Riley Children’s Hospital, 

Indiana University School of Medicine, Indianapolis, IN 

Jim Loker, M.D.., Bronson Methodist Children’s Hospital, Kalamazoo, MI 

Jennifer Miller, M.D., M.S., University of Florida, Gainesville, FL 

Norma Tarrazas, R.D., L.D., Texas Children’s Hospital, Houston, TX 

Barbara Y. Whitman, Ph.D., St. Louis University, St. Louis, MO 

Liaison Members: 

Suzanne B. Cassidy, M.D., U.C.I. Medical Center, Orange, CA 

Janalee Heinemann, M.S.W., Dir. of Research & Medical Affairs, PWSA (USA) 

Carolyn Loker, Board of Directors, PWSA (USA) 

Ken Smith, Board of Directors, PWSA (USA) 

Care Providers Advisory Board 

Chair—Jackie Mallow, Prader-Willi Homes of Oconomowoc, WI 

Patrice Carroll, Advocates, Inc., Framingham, MA 

Jeff Covington, Catholic Charities Services, Albany, NY 

Steve Drago, ARC of Alachua County, Gainesville, FL 

Evan Farrar, PWSA (USA) 

B. J. Goff, Goff Associates Disability Consultants, Springfield, MA 

David Wyatt, PWSA (USA) 

Mary K. Ziccardi, REM Ohio, Inc., Valley View, OH 

Adults with PWS Advisory Board 

Shawn Cooper, Georgia — Brooke Fuller, Michigan 

Conor Heybach, Illinois — Kate Kane, Maryland 

Lauren Lange, Georgia — Andy Maurer, South Carolina 

Margaret Miller, Pennsylvania — Abbott Philson, Maine

2 0 0 8 

Statement of Activities

2 0 0 8 

2008 Financial Review 

Prader-Willi Syndrome Association (USA) 

Breakdown of Services Provided 

Fundraising, 5% 

Management and 

General 9% 

Conference 12% 

Crisis 

Intervention and 

Family Support 

18% 

“Thank you for the PWSA Crisis Intervention Program. 

Our daughter was in a downward spiral. Fortunately 

the PWSA Crisis Intervention Program was there. 

Thanks in no small part to the Crisis Intervention 

Program, her quality of life is now high and happy. 

We hope you can continue this important and 

lifesaving program to help our daughter and her 

peers. We are enclosing a donation so that this 

important resource can continue. We encourage 

other PWS families, providers, caregivers and friends 

to avail themselves of the Crisis Intervention 

Program. We encourage them to donate as well.” 

Awareness and 

Education 

21% 

Medical and 

Research 

35% 

$492,250 

Medical and 

Research 

Donated Professional Time 

($682,015 total) 

$74,740 $65,275 $49,750 

Crisis 

Intervention and 

Family Support 

“Enclosed is my membership 

renewal and a small donation for 

the crisis intervention work that 

you do. I have been so grateful in 

the past for all your help and 

wanted to let you know that your 

resource materials on obtaining SSI 

helped us out very much. We were 

prepared to be turned down and 

need to appeal, but we were 

accepted on the first round! I 

appreciate all the work that your 

fantastic staff has done to make 

this process more successful for 

families. I wish I could donate more 

at this time. Thank you all for your 

hard work.” 

Awareness and 

Education 

Management 

and 

Administration

Prader-Willi Syndrome Association (USA) 

8588 Potter Park Drive, Suite 500 

Sarasota, FL 34238 

(800) 926-4797 or (941) 312-0400 

fax (941) 312-0142 

info@pwsausa.org 

www.pwsausa.org

FINAL 2008 Annual Report.pub - Prader-Willi Syndrome Association

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