2011 Annual Report FINAL.pub - Prader-Willi Syndrome Association

Annual Report — 2011

Prader-Willi syndrome (PWS) is a birth defect identi�ed 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 a�ects 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 

On behalf of the PWSA (USA) Board of Directors, our National O�ce, 

State Chapters, and friends and families associated with PWS, we wish to 

express to our many medical professionals, providers, and contributors 

our sincerest appreciation for the support and advocacy we continue to 

receive. Through the generosity and hard work of your �nancial and 

volunteer contributions, in 2011 we were able to grow awareness of 

PWS while continuing to provide the extraordinary Research, Family 

Support, Medical, and Communication services so needed by individuals 

and families impacted by PWS. In addition, in November we hosted a 

very successful National Conference that brought families and 

professionals from around the world together in Orlando. In the 

following pages you will see that we have much to celebrate in looking 

back on 2011. We also have much to anticipate as we look into the 

exciting programs that are already materializing in 2012. We are proud 

of the professional support PWSA (USA) is able to provide our families 

and eternally grateful to our PWS community of benefactors. 

Sicerely, John Heybach & Ken Smith ~ PWSA (USA) Board of Directors 

2 0 1 1 Annual Report 

PWS Advisory Board — Sarasota, Florida 

Top Left to Right: Lauren Lange; Andy Maurer; 

Conor Heybach and Kate Kane 

Bottom Left to Right: Brooke Fuller; 

Abbott Philson andShawn Cooper 

OUR MISSION: Prader-Willi Syndrome Association (USA) is an organization of families 

and professionals working together to raise awareness, o�er support, provide 

education and advocacy, and promote and fund research to enhance the quality of life 

of those a�ected by Prader-Willi syndrome.

CRISIS INTERVENTION PROGRAM 

The PWSA (USA) Non-Medical Crisis Intervention program has been unique among 

the rare disease communities for a long time. This year we have again taken the 

program to a new level and have developed the Family Support Team. PWSA is 

happy to report positive feedback as the organization shifts from a Crisis Counselor 

Model to a more comprehensive Family Support Model of services. The new model 

allows more comprehensive support services, consistent communication, and 

collaboration between medical, nonmedical and crisis service providers. The 

expanded Parent Mentor Program plus weekly team meetings provide more 

coordinated care and more consistent, ongoing peer support for our families. We 

have also included a new family support counselor that helps our Spanish speaking 

families, and a new Resource Coordinator to help develop the ever expanding 

resource list in each state. Over the years we have continued to build a collaborative 

and creative team spirit that continues to grow the program to meet the emerging 

and changing needs of the PWS community. 

• The Crisis Program handled 1467 crisis cases in 2011 making this the forth year 

In a row of over 1000 crisis contacts during a calendar year. 

• The top �ve reasons people called the Crisis Program in 2011 were: Advocacy 

(29%), Medical (26%), School Issues (15%), Behavior (11%), New Diagnosis (7%), 

Placement Issues (6%). 

• Utilizing the Willet Crisis Fund in these di�cult economic times to provide PWS 

trainings for schools and residential programs across the country, transportation 

for children and adults needing specialized PWS treatment at the Children’s 

Institute in Pittsburgh for behavioral and health crises, and legal consultations 

for individuals with PWS involved in a legal crisis. 

• Through our popular column in the Gathered View, the Counselors Corner, 

we’ve regularly been able to share important crisis information with our 

members on a variety of topics in 2011. 

Top �ve reasons people called the Crisis Program in 2011: 

Type of Case % of calls 

Advocacy 29% 

Medical Crisis 26% 

School Issues 15% 

Behavior 11% 

New Diagnosis 7% 


CRISIS (CONT) 

Other activities we accomplished and developed in 2011 were: 

• Completed the integration of the Family Support Team, including incorporating 

and revaluating the Parent Mentor program, looked at how to recruit, train and 

evaluate mentors. Developed a parent mentor strategic map, along with a new 

parent Mentor guidebook and protocols and developed a system to follow up and 

track Parent Mentors. 

• Group moderator guideline for yahoo groups 

• New diagnosis packet letter and a new packet 

• Sample BSP plan for school that re�ects the Behavior needs of children in middle & 

High school 

• Updated the educational packet and a PWS-like packet for parents 

• Chapter Leader Survey to capture resources by state 

• New Law Enforcement statement, one for adults and one for children 

• Hired a Spanish speaking Crisis Counselor and developed a Spanish Packet 

• Hired a Resource Coordinator/ Liaison for National and State Chapter Leader Team 

WEBSITE 

• 201 Counties had visitors to our website in 2011. 

• 600,746 visitors during the year with 471,688 from the US. 

• Most visitors viewed the information about PWS general amd medical information. 

Research into PWS was the third most viewed section. 

• NIH, National and State Developmental Disabilites, Provider Organizations, Medical 

Organizations and Educational Organizations hold direct links to our site. 

• Resources are added everyday especially those listed at www.pwsausa.org/links/ 

• Spanish section of the site holds information approved by NIH. 

• Members only resources include: Care Package, Handouts, and Newsletters. 

• Over 2000 people �nd support and networking through the many email support 

groups at www.pwsausa.org/egroups/index.htm. 

CHAPTERS 

• Email support groups were setup for each of the 50 US States including one for 

providers. 

• Chapter Leader Support (CLE) email group is more active with reports from every 

corner of the US. 

• Chapters are encouraged to help proved local support to the newly diagnosed 

families

RESEARCH 

• Prader-Willi syndrome has been described as the Window of Opportunity for study into 

the perplexing problems of hunger and the uncontrollable drive to eat. In 2011, PWSA 

(USA) sponsored the 25 th Annual Scienti�c Conference in Orlando that was 

attended by both professionals in the �eld and parents who attended the general 

conference. PWSA (USA) has also worked all of 2011 planning for the 2 nd 

International Hyperphagia conference (the extreme unsatis�ed drive to consume 

food) in 2012 in collaboration with the world’s largest obesity research center, 

Pennington, on Baton Rouge, LA. One of the outcomes will be a commitment to 

funding by PWSA (USA) and FPWR, of the Best Idea Grants (BIG) on hyperphagia 

though funding from One Small Step. This conference di�ers from the 1 st 

hyperphagia conference in that we have many invited speakers who are world 

renown for their research work in the area of hunger, obesity and hyperphagia – 

with the goal of opening their minds and research to the �eld of PWS. We never 

forget that the #1 deadly enemy of PWS is the appetite. 

• PWSA (USA) paid $185,000 of the $249,992 committed to �ve hyperphagia 

research grants (see web site for details) and $75,000 for three research fellows 

working on PWS under the RDCRN project. We believe we need to help train the 

next generation of researchers (that are predicted to be in very short supply) and 

do all that we can to encourage their interest in PWS. The process began for 

approving a new round of grants that will be funded in 2012. 

• Almost every major breakthrough in PWS research has been made by our PWSA 

(USA) scienti�c and medical advisory board members. They donated a recorded 

$309,380 worth of services in 2011. (Plus many more hours not recorded.) 

• PWSA (USA) Director of Research & Medical A�airs is actively involved with CPAG 

(Coalition for Patient Advocacy Groups) that is part of the ORDR (O�ce of Rare 

Diseases Research) which includes over 80 rare diseases. It is in conjunction with 

the NIH rare diseases center grant with which PWSA (USA) participates. This gives 

visibility and focus to OUR rare disease and helps to promote researchers 

collaborating with advocacy groups. Also, as vice president of the PWS 

international organization, IPWSO, she communicates and collaborates with 

researchers around the world on a regular basis – and shares the information with 

members as needed. 

• PWSA (USA) now has data on more than 1,900 children and adults with PWS in our 

�rst medical survey, and 614 from the second medical questionnaire. There is 

additional information from four focused surveys on: Scoliosis & PWS, Autism & 

PWS, Gastric/Intestinal Disorders in PWS, and Assisted Reproduction & PWS. We 

also have an ongoing study on the deaths of PWS. The results of this extensive 

medical data continue to be shared with PWS researchers. Several articles 

published have been fostered by the results of these surveys. 


MEDICAL EDUCATION AND SUPPORT 

• 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 

Scienti�c Advisory Board and responds to all through a Triage Support 

System. 

• PWSA (USA) provides support for medical crises and medical advocacy for 

360 families in 2011. 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 con�dentiality, or international emails that are 

not able to be documented in the database. 

• In 2011 PWSA (USA) created a new growth hormone treatment booklet, 

physical therapy booklet, and updated several other medical related 

booklets and brochures. There are medical articles and alerts create for 

every newsletter and the web site thanks to the assistance of PWSA (USA) 

Clinical and Scienti�c Advisory Boards. Medical packets and an extensive 

number of medical booklets and DVDs are provided for parents and 

professionals. PWSA (USA) also collaborated with the CA Foundation and 

IPWSO to create and distribute a new book and DVD to aid PWS care 

providers. 

Saving lives around the world—Through the collaborative relationship 

with IPWSO, PWSA (USA) shares the vast amount of medical articles created 

at PWSA (USA) with over 90 nations -- many of whom have no other support 

system in their country. These nations are encouraged to translate the 

material into their own language. E-mail support is provided daily for 

desperate parents and professionals in newly developing countries, and in 

2011, people from 201 countries visited PWSA (USA)’s web site. PWSA 

(USA)’s medical director collaborated with IPWSO (expenses paid for by 

IPWSO) to provide the educational materials and helped host the PWS booth 

at the ESPE conference in Scotland in Sept. 2011 which was attended by 

2,500-3,000 endocrinologist from all over the world. 

• Near the end of 2011, PWSA (USA) formed a new initiative to help support 

organizations around the country.

DEVELOPMENT AND AWARENESS 

PWSA (USA) continually strives for betterment of all aspects of the organization, 

including development and awareness. In 2011, after preparations and planning 

stemming back over a year, a new initiative was rolled out to do just that. The 

Prader-Willi Syndrome On The Move SM national campaign enjoyed an inaugural 

year with a series of events around the country. The uni�ed campaign has key 

components—it occurs in the month of May, PWS Awareness Month; it is 

comprised of movement-based activities symbolizing the need for active lifestyles 

necessary for those who have PWS; and it generates PWS awareness and funds to 

support PWSA (USA) and its state organizations. A new On The Move dedicated 

web-site was created as was a communications strategy, including a plan for social 

media usage. Campaign branded merchandise sold as part of the campaign 

provides residual awareness after the campaign month ends. The combined e�orts 

of volunteers, the national and state organizations, and participants raised 

approximately $125,000 and garnered incalculable PWS awareness in local 

communities. Most importantly, the strengthened and new connections between 

families and friends, the feelings of empowerment in working to conquer PWS, and 

the increase in understanding in areas where those a�ected by PWS live gave rise 

to smiles that reminded us all about why we work so hard and also the need to 

have some fun. 

PWSA (USA)’s largest annual direct mail campaign, the Angel Fund, saw the close 

of the 2010-2011 Live. Life. Full. themed campaign and the start of the 2011-2012 

new theme This Is My Association which was launched at the national conference 

in November 2011. The 2010-2011 concept was a reminder to live “Full of Hope” for 

the future because of advancements in research and other programs, “Full of 

Knowledge” with education from PWSA (USA) to help take charge of circumstance, 

“Full of Support” with services provided by PWSA (USA) so that one is never alone 

when dealing with PWS, and “Full of Thanks” for those who contribute toward the 

well-being of those who live with PWS. The 2010-2011 Angel Fund, despite the 

economic hardships faced by the nation and our members, remained strong with 

over $150,000 contributed. 

The 2011-2012 Angel Fund, with its own branded logo, included a new element— 

video stories. Members, professionals and experts had the chanceto share their 

unique connections to PWSA (USA) and the resulting positive impact on their 


lives or careers. PWSA (USA) never forgets that it is the people who drive the 

mission and vision of this organization—those served because they have PWS, 

those serving those with PWS, and those working to cure PWS. When people 

speak of PWSA (USA) being “their” organization, they are expressing how 

PWSA (USA) has made a di�erence for them. Every day the Association receives 

calls for help and PWSA (USA) picks up the phone with help at the ready. 

PWSA (USA) had the honor to announce the new Clint and Karla Hurdle 

Endowment in 2011, as well. From just a few short months after their 

daughter, Madison’s, birth and diagnosis of PWS, Clint and Karla Hurdle have 

lived a deep commitment to not only do all they can for Madison, but to also 

help others living with PWS. Because of his prominent position as a major 

league baseball manager, Clint was invited to become PWSA (USA)’s national 

spokesperson when Madison was still an infant. He quickly agreed. Clint and 

Karla took that commitment further and agreed to have the Endowment for 

Prader-Willi Support established in their names. This endowment will 

speci�cally fund support services to help people of all ages with PWS in a 

future-focused funding approach that is committed to building the long-term 

stability and sustainability of the organization. Only the interest of the fund will 

be used each year. It’s a gift that keeps on giving. 

Of course, PWSA (USA) would be remiss without mentioning the impactful 

e�orts of those who dedicate their time producing grassroots events. Dozens 

of individuals provide signi�cant income 

stream to the Association throughout the 

entire calendar year. In 2011, collectively 

they raised over a quarter of a million 

dollars. PWSA (USA) is proud of our 

‘association’ with all of these people who 

take to task the business of �nancial gain 

for our organization. The Association 

does all it can to support them 

supporting us because in large part, our 

work and the ability to achieve is, indeed, 

interlocked greatly with these volunteers. 

PWSA (USA) could not exist as a worldclass, 

preeminent PWS organization 

without our large volunteer base. They 

are part of our good fortune.

Diamond: $30,000+ 

PW FL Association Inc 

Steve and Lois Willett 

Platinum $10,000+ 

Torbert Produce Inc 

PWSA of Colorado 

Russell and Jane DeFauw 

Johnson & Johnson - Matching Gifts Program 

Pittsburgh Associates 

Univ of Alabama at Birmingham 

Utah PWSA 

Clint and Karla Hurdle 

The Children's Institute 

Truist 

PWSA of Indiana 

Colorado Rockies Baseball Club Fnd. Inc 

Latham Centers Inc. 

Rob and Debra Lutz 

Private Foundation of Maryland 

RGK Foundation 

Sam P Alterman Family Foundation Inc 

Joseph and Rosemarie Schreier 

Woodbury Financial Services, Inc. 

Gold: $5,000+ 

Donald F Armento MD Charitable IRA 

Storr Family Foundation 

PWSA of Wisconsin, Inc. 

GA Assoc. for PWS, Inc. 

Tim and Carol Hearn 

PWSA of New Jersey 

Kennedy Space Center FCU 

PWSA of New England 

Doug Dawson 

Michael Peebles 

Chris Brophy 

Doud Companies 

Alan and Phyllis Fishman 

Gerald J. and Dorothy R. Friedman NY Fdn 

Gold Crown Foundation Inc 

Janalee and Al Heinemann 

IL - Prader-Willi Group, Inc 

Anthony and Anne Keder 

Scott Leach 

PW California Foundation 

David Storm 

The Paul E Singer Foundation 

2 0 1 1 Donors 

Silver: $2,500+ 

Oliva Italian Eatery 

Harvard Business School 

Nat'l Kitchen & Bath Assn 

Lori and John Lens 

Living the Dream Foundation 

PWSA of Michigan 

CFC-Global Impact 

Capraro Family Foundation 

PW Alliance of NY, Inc 

Christie and Kevin Bevacqua 

Kerry and Steve Sexton 

Silver: $2,500+ 

Thor and John Berg 

Marc and Shoko Gotoh 

Cindy Lang 

Martin Niehaus 

Tom and Lorrie Russo 

Jim and Joan Gardner 

Jim and Rita Koerber 

United Way New York City 

Anonymous 

Jeremy & Angie Flug Foundation 

Mitch and Sondra May 

PWSA of Oklahoma 

PWSA of Pennsylvania 

Prader-Willi Homes of Oconomowoc 

PWSA of Ohio 

David and Janice Agarwal 

Greater Kansas City Community Fnd 

Tracey and Bart Lombardi 

Keith O'Donnell 

Pieland LLC 

William Stege 

Amy and Thomas Luttrell 

Bob and Mary Hill 

PWSA of Minnesota, Inc. 

Kerry Headley 

Marty Gauss 

Sara and Jean-Pierre Montillier 

Anonymous 

Lori and Darrin Kerbs 

CFC-Gulf Coast 

Michele and Troy Shingleton 

University of FL Health Science Center 

CFC-Global Impact Overseas 

United Way Southeastern Pennsylvania 

Elizabeth Larsen 

Silver: $2,500+ (cont’d) 

Peter and Kathy Devlin 

Drayer Physical Therapy Institute 

Hinton Electric 

Olson Family Foundation 

Natalie Sierra 

Aris and Gibson McMahon 

Lee Stanziale Family Revoc Trust 

Dorothy and Thomas Morse TTE 

CFC-United Way San Diego 

Steve and Shari Rehder 

ClearChannel 

Woods Services, Inc 

Amgen Foundation 

Goldman, Sachs & Co - Matching Gift Program 

Stephen and Michele Leightman 

Suzanne Cassidy, MD 

Chevron Humankind Matching Gift Program 

The J R Headley Fund 

HP Company Foundation 

United Way Brevard County 

Alliance Data 

Andrew and Laurie Braun 

Virginia and Ray Podmenik 

Kyle and Anita Perrault 

Linda Husar 

Liberty Mutual Surety 

Bobby Barrineau 

Brent Ivinson 

United Way Westchester & Putnam Inc. 

Martin and Gladys Gillette 

Dawn Allard 

Cinda and Curt Ball 

Paul and Robin Barrett 

Daryl and Monique Bethea 

Ken and Kathy Boehl 

Paul Brunner 

Todd and Kelly Cieplinski 

Mitchell and Francine Cohen 

Matt and Jennifer Dean 

Ross and Jane Dudley 

Expert Flood Examiners LLC 

Gary Ferdig 

Foundation for Prader-Willi Research 

Bob and Barbara Gallagher 

David and Judy Gordon 

Jay Coggeshall and Susan Henoch 

Clint and Louise Hurdle

Silver: $2,500+ (cont’d) 

James Van Becelaere Company Inc 

Mary Ann Lockhart 

Bonnie Loeb 

Ying Lu 

Jill and Paul Lynch 

Sue and Paul Mahler 

Leah Palmer 

Joe and Joyce Peden 

Kristi and John Rickenbach 

Timothy Russell 

Sandefur Schmidt 

Donna Martucci and Gary Segal 

James and Denise Steck 

Strong Lachemann Foundation 

The Jesus Fund 

The Prudential Foundation Matching Gifts 

James Trentacosta 

Tyrus Group LLC 

Yulius Pollyansky and Marjorie Velasco 

Winthrop University Hospital 

Bronze: $1,000 

Laura Shea 

Dana Coit 

Sid and Lisa Thornton 

A.N.C. Home Management/Illustrated Properties 

United Way Central Indiana Inc 

Sam, Barbara and Mark Rubinson 

CFC-Cincinnati Metro Area 

Maria and Terry Tenbrunsel 

Rich Yoke 

DJJCPA 

PWSA Texas Chapter 

CFC-Dallas Ft Worth Metroplex 

Mercy Academy 

CFC-South Hampton Roads VA 

Anonymous 

Asheet Mehta 

Employees Charitable Campaign-NJ 

Gary and Lynette Hosler 

Timothy Page 

Toy Wall Foundation, Inc. 

Mary K Ziccardi 

Bill Barrett Corporation 

Pamela Cochrum 

Daale Livestock 

John and Carolyn Rodman 

CFC-Principal Combined Fund Org 

John and Mary Sue Heybach 

Disability Rights Florida 

2 0 Donors 

1 1 

Bronze: $1,000 (cond’d) 

Nick and Carolyn Gordon 

Christian Plummer 

Amy and Matt Tenbrunsel 

Frank Keenan Jr 

Securus Group 

United Way Central & NE Connecticut 

Terri Misseldine 

Bob Parry 

Dave and Karlie Adams 

Kenneth Byck 

Joseph DiFilippo 

Kelly and Amy Soncarty 

The Little Farm 

vmware Fnd Matching Gift Program 

Merck Partnership for Giving 

Karen Mrad 

Catrina and Scott Bubier 

Jennifer Loeb 

CFC-Hawaii Paci�c Area 

Michelle and Brian Wagner 

Richard Johnson 

Contributors $500+ 

Laura and Anthony Abbott 

Anonymous 

ARC - Alachua County 

Asset Recovery Corp. 

Margaret and James Avent 

Raymond and Louise Bagg 

Contributors $500+ (cont’d) 

Roy and Claudia Baggerly 

Bob and Peggy Baker 

Norman and Cynthia Barkeley TTEE 

Howard and Patricia Bates 

John and Mary Ann Bellanti 

Robert Bernstein 

Mary and Lou Bladel 

Kevin Bokoske 

Bridgewater Associates 

James and Dolly Brien 

Merlin and Ranae Butler 


Lois Carson 

David and Mary Beth Cass 

Franca and Larry Copeland 

Christopher Cruz 

Division of Pediatric GI/Nutrition 

DYCON Enterprises Inc 

Julia Fernandez 

Frontier Labs Inc 


Richard and Sharon Greene 

Robert and Cecilia Harrison 

Hawarden Community Hospital 

Robert and Mary Hodgdon 

Hope for Children Foundation NJ Inc 

Peter Hupperich 

Integrated Archive Systems Inc. 

International Design Corporation 

Sister Mary Helen Kane 

Sue Keen 

Elizabeth Kenney 

Shoun and Julie Kerbaugh 

Marjorie King 

Bonnie Kraft 

Randy and Linda Kramer 

Nathan and Haley Lambright 

Liberty Bank 

Jay Loeb 

Kelley and John Love 

Jean Lowe 

Richard and Patricia Lutz 

Marty and Fran McLean 

Kim and Lonnie Meredith 

Millipore Corporation Giving Program 

Janice Mobilia 

Je� Moore 

Navigon Financial 

Susan and Tom Nebel 

Pappagallo Family Foundation 

Bob and Margaret Parker 

Susan and Bob Parkerson III 

Daniel and Sara Jane Pate 

PeoplesBank 

P�zer, Inc. 

Charles and Deloris Phillips 

Prairie View Management Inc 

Lori and Terry Price 

PWS Arizona Association 

Charles Ranberg 

Darrel and Margaret Reuer 

Royal Bank of Canada 

Richard Ruzicka, Jr 

Mark and Linda Ryan 

Sandoz Inc. 

Jamie and Andy Schoenberger 

Gary and Sharon Seedorf 

Josh and Megan Self 

Curt and Marion Shacklett 

Carmen Sherbert


Carol and Hans Storr 

Alice and Peter Tenbeau 

TEQ Instruments Corp. 

Jack Tsao 

John and Jeanne Vazzana 

VFW 2179 Ladies Auxiliary 

Kristi Wallman 

Dallas and Patricia Webb 

Bruce and Bebe Whyte 

Roxanne and Je� Wolfer 

Wonderland Camp 

Douglas and Carrie Yakola 

Supporters $100 to $499 

AVC Inc. 

Gary and Adrienne Lamanno 

The McGraw-Hill Companies 

Employees Community Fund/Boeing Co. 

Linda Steppe 

CFC-Gateway 

Mark Defrees 

Kevin Mullen 

Fannie Mae SERVE Matching Gift Donations 

Mary Tiedtke 

Palmer Trinity Private School Inc. 

Kabookabear LLC 

Mary Fava 

Lisa and Je� Jahn 

CFC-Action for Boston 

Derek Barboza 

Henry Block 

Steve and Patty Casey 

Karl and Sharon Cressman 

Game Day Memories LLC 

GlaxoSmithKline Foundation 

Barbara and David Gow 

Jerry Layden 

Lighthouse Investment Group 

Loon Pond Bog 

Edward and Allyson Minahan 

CFC-Heartland 

CFC-Greater Indiana 

Bergen Co Technical Sch - Adult Educ 

Susan Furste and Errett Carpenter 

Lois and Herb Glass 

Robin Fleischmann and Mark Greenberg 

Instructional League 

Tina and John Kiel 

Morgan Stanley Smith Barney 

Lois Schmitz 

David and Jane Shoemaker 

Edward and Andrea Wachter 


Supporters $100 to $499 (cont’d) 

Tracy and Je� White 

Nahla Harik-Williams and Christian Williams 

CFC-Community Health Charities 

United Way Palm Beach County Inc 

Scott and Michelle Holbrook 

CFC-United Way-Greater Northwest Ohio 

Sure Shot Promotions 

D & M Enterprise Group LLC 

Jacqueline Prock 

Back to Health Chiropractic 

CFC-North Texas 

Jennifer and Scott Schaupeter 

Angela Mushkin 

Sisco Enterprises 

Jon Rock 

Michael Cox 

Peter and Henrietta Daale 

United Way National Capital Area 

Balancing Act Enterprises Inc. 

Mary Barrick 

Alfred and Marie Bevacqua 

Nancy and Shaun Cashman 

Albert and Tuong-Trang Chang 

Peter Chester 

Robert and Barbara Christenson 

Creative Vibe Advertising Inc 

Mark Dormann 

Dustar Express Inc 

Fraternal Order of Eagles 

Heartspring 

Sandra Karlson 

David and Pru Kawasaki 

Michael and Patricia Kremer 

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

Ronald and Sue McNeil 

Maureen and Chip O'Neil 

Jean and Roger Parent 

Perkins, Lund, Collar & Associates PLLC 

Stephanie and Ted Ranft 

Mike and Connie Shaw 

Janet Colturi and Troy Shingleton 

Larry Smith 

Stephen Smith 

SMK Clifton Pancake House 

Cindy and Matt Szapacs 

Matthew Tenbrunsel 

Tad Tomaseski 

Barbara and Joseph Wolf 

John and Michelle Yager 

CFC-Community Health Charities of Florida 

Gary and Kim Albers 

Christine and Je� Bevacqua 


Thomas Hall 

Dominic and Melissa Natale 

Donovan Nichols 

Brad Schultz 

Keys Tinney 

CFC-Southern Nevada 

U S Census Bureau 

CFC-Greater Olympic Penninsula 

Jenell Rud 

Fran Baehr 

Therese Botz 

Brian and Denise Monsma 

Kira Lieberman 

Eric Rizzo 

Deirdre and Paul Vignone 

Peter and Madison Berl 

John Allard 

Cathy Ameling 

Robert Bastiaans 

Carlo and Eleanor Bergonzo 

Keith and Katie Boeck 

Borchers Supply Inc 

Sharon and John Buckley 

Erin Bysiewicz 

Kate Bysiewicz 

Richard Carbone 

Rick and Janet Carlson 

Clark Family Fund of the Comm. Fnd. of NJ 

Jason Cole 

John and Susan Comes 

Mary Culver 

Jean and Anthony De Biasi 

Diane Dewbrey 

David Domstein 

Bill and Nancy Dvorak 

Robert and Barbara Eisele 

Mark and Kathy Evans 

Jean and John Faasen III 

Walt and Marge Foran 

Amber and Ronald Genova 

Steve and Sandra Ginn 

Gene and Mary Goldin 

Phil and Becky Gulling 

Erich Hamel 

James and Margaret Headley 

Roger Healy 

Jacqueline Herbert 

Diane Hoefer 

Angela and Mark Hughes 

Daniel and Linda Jannette 

Helen Jenks


Patricia and Robert Jepsen Jr 

Nicole Jones 

Bill and Barbara Kerrigan 

Nancy Kiskis 

David Klein 

George and Lee Ann Kuntz 

Colleen and Ken Lamb 

Florence Larsen 

Mercedes Lat 

Ronnie and Ira Levine 

Lewis Shaw Enterprises LP 

Thomas and Cheryle Mackie 

Rick and Mary Mathews 

Therese McAllister 

Shawn and Chris McCandless 

Joe and Joanna McMahon 

MFC Netform Inc. 

Randall Moore MD 

Chuck and Melinda Morrow 

Vincent and Kathleen Natoli 

Thomas and Brenda Parkes 

Brad and Robin Peek 

Saeed Pirooz 

Renaissance Charitable Foundation Inc 

Donald Roberts 

Mayra Rubio 

Sanford Health 

Ron and Marilyn Schaaf 

John Schilt 

Robin and Ellery Sedgwick 

Mark and Maria Siegfriedt 

Joseph Smitelli III 

Kirk and Janet Smith 

Soitec USA, Inc. 

St Luke's Regional Medical Center 

Jennifer and Michael Taylor 

The Quinlan Foundation 

The Ron and Kathy Colby Family Foundation 

The Shaggy Dog LLC 

Van Chevrolet-Cadillac Inc. 

Bill and Joan Wade 

Gerald and Christine Waldrop 

James and Joanna Walker 

Wal-Mart Foundation 

Wayne and Karen Wendel 

Howard and Genevieve Willis 

Bruce Wintle 

Ron Woods 

Dwight and Dawn Youngkin 

Give With Liberty 

CFC-Action for Boston 

CFC-Community Shares 



IBM Employee Services Center 

Kevin Jerome 

Tom Manoogian 

John Prall 

The Richard G Rosenthal JCC of N Westchester 

Christine Mazzella 

William Bennett 

Sandy and Frank Ditta 

Susan Fisher 

Stacy Sherry 

Carol Potts 

Tom and Jane Cramer 

Brad and Abby Beane 

Steve Butz 

Lenore Peters 

James and Robin Ferguson 

James and Kimberly Whitt 

CFC– N Charleston 

Sonja Pfei�e 

Edward and Veda Doughty 

Janet and Vincent Maroldo 

Patrick and Sue Coyne 

Andrew Theodore 

James and Kim Mewhirter 

Phil DuBois 

MasterBrand Cabinets, Inc. 

Karen Abrams 

ACACIA Life Insurance Company 

Maria and Stephen Alvarez 

Je� Anderson 

Ann Finlay Inc. 

Arctic Refrigeration Co of Batavia Inc 

Melissa Arp 

AXA Foundation-Matching Gifts Administration 

Robert and Deanna Barnett 

John and Kerry Bennett 

Joanne Bladel 

Kelly and Christopher Blake 

Vincent, Maria, Lonnie and Madeleine Blankenship 

Dan and Kim Bonenberger 

Chris Borge 

Pam and Nelson Bowers 

Brigantine Education Assc 

Je�rey and Tracey Bulis 

Mary Clarke 

Cody & Cody LLC 

Chris and Sam Costa 

Kelly and Michael Cox 

Cheryl Creuzot 

Nichole Dardano 

Bill and Connie Devitt 

Julie and Je� Doherty 


Patricia Doolin 

Frances Du�y 

EK and EK Construction 

ETC Company Inc. 

Mike and Debbie Fabio 

Leslie and Michael Fanfa 

Margaret and Ronald Fenaughty 

Denise and Bill Fleming 

Carli and William Forsythe 

Stephen Foster 

Harold Tipton and Tange Gavin 

Dale and Sally Gibson 

Keith and Bethany Golembiewski 

David and Donna Goodfellow 

Louise Greenswag, RN, PhD 

George Gwozkecky 

Robert and Nancy Haeni 

John Halter 

Maureen Hamilton 

Robert Henson 

David Holwadel 

Kent Holwadel 

Homestead Air Conditioning & Heating 

John and Peggy Hoover 

Richard and Helen Iacabucci 

Laura and Dan Jacoby 


JP Morgan Chase & Co 

Heather Karagozler 

Jennifer and Joseph Kinn 

Laurie and Paul Kitchin 

Knights of Columbus 

Koopmans Concrete Co. 

George and Rosemary Lynn Kosmak 

Lorraine and Richard Kumlin 

Kenneth and Rayma Larson 

Charles Layton 

Neil Lerner 

Raymond and Mary Luther, Jr. 

Margaret Mack 

Lars Mahler 

Brian and Christina Malewicz 

Charles and Judith Marino 

Robert Mason 

Giselle Mazier 

Robert Mazzoni Jr. 

Kathleen McKee 

Raymond and Holly Meleski 

Darrick Mix 

Thomas and Katherine Moore 

Patrick Morley 

Prudence and Tom Nelson


Olga and Richard Newberry 

Zafar and Ghazala Nomani 

Jodi and Ryan O'Sullivan 

Peroni Financial Group LLC 

Kevin Pies 

Piper Ja�ray Employ Giving 

Stan Pitman 

Kelly and Jerome Polack 

Kenneth and Ruth Prettyman 

Mark and Nanette Roenigk 

Steve Rutledge 

Drew Sasse 

Matthew Schlaepfer 

Theodore and Elizabeth Schmidt 

Gary and Francine Segal 

Damien Shane 

Silvia Heating & Air Conditioning Inc 

Staci and Mitchell Sklar 

Judith Skornicka Schwartzbaum 

Rebecca and Matt Smith 

Clinton and Mary Speiser 

St. Paul Education Center 

Catherine Stack 

John and Joan Stoner 

Jan and Claude Stransky 

Chelsea Talbot 

Lisa Tenbrunsel 

Julie Tench 

The Balaban Law Firm 

Anthony and Laura Trupiano 

Ron and Petra Unger 

Patrick Varni 

Marjorie and Robert Walcutt 

B J Waterman 

Carol and Jerry Williams 

May Woei 

Janice Wright 

Joseph and Jayne Young 

Ruth Zimmerman 

Christopher and Robyn Barnes 

Brian and Concetta Redwick 

Walter and Ellen Santarelli 

GoodSearch 

CFC-Southwestern Idaho 

Anonymous 

Terry and Kathy Huitink 

Todd Braidech 

Deborah Elliott 

Michael Lagunovich 

Metro Joes Pizza and Subs Inc 

P J Enterprises Inc. 

Kentuckiana Yacht Sales 

Linda and Albert Moravcik 



Anonymous 

Ivelisse Muller 

Wise Choice of Brevard Inc. 

Anthony and Laurine Centrella 

Herb and Mary Berl 

Christine Bodziak 

Je� Butzke 

Bruno et Christiane Chaigne 

Creative Health Solutions 

Andy Rankin 

"Gregory ani" 

A I Technology Inc. 

Jack and Helen Aaron 

Phyllis and Robert Abrahamsen 

Carla Thomas and John Allaman 

Brad and Tracy Ames 

Robert and Jo Ann Antanaitis 

Astro Rigging Corp. 

Biele�eld School Cheer Fund 

Katherine and Matthew Brodsky 

Bronson Healthcare Group 

Raymond Brunjes RPT 

David and Hildy Bubier 

Joseph and Barbara Casamento 

Barbara Cheney 

Chuck Collier 

Collins, Einhorn, Farrell & Ulano� P C 

Mary and Ken Conry 

John and Helen Cooper 

CP Consulting Services LLC 

Lorie Linn and Dan Crowell 

Bob and Patty Dion 

Iris and Paul Fishman 

Eric Goldstein 

Andrea Gyenes 

Linda Haer 

Amber and Thomas Haggard 

Melissa Hassan 

Robert Henderson 

Rebecca Jacobson 

John Keegan 

Wendy Kochevar 

Land-Tech Consultants Inc. 

Loren Larsen 

Phillip Lee, MD, FAAP, FACE 

Little Steps Music, LLC 

Jerrod and Wendy Lynott 

Glenda Shepard and Harold Macks 

Lisa and Ronald Marasco 

Marinelock LLC 

Mason Mix Inc. 

Karen McCoy 

Jean Mook 


Holli and Jason Murdock 

National Christian Foundation 

Mirtha Ospina 

Dawn and Kevin Pike 

David and Lesley Pincus 

Marlene Pratto 

Jean Roenigk 

Peter and Robin Romano 

Jessica and Joshua Schmidt 

Shannon Fence Company 

Bobby and Norva Smith 

Brian Smith 

Michael Tanton 

William Tenbrunsel 

Laura Thomsen 

Jane MacKenzie and Demetri Wagner 

Marilou Wett 

Arthur and Ida Wollock 

YourCause LLC 

Gregory and Shannon Zerzan 

Denise and Stephen Bujalski 

Joseph and Muriel Hanf 

Janet Rowe 

CFC-L A Area 

John and Tonya Bandy 

Loretta and Leonard Barboza 

Rachel and Raul Barrial 

Ira and Kelly Co�n 

Jim and Kimberly Daniel 

Lucas Giguere 

Kevin Knight 

Charles and Kimberly LaMattina 

Charles Oconnor 

Eileen and John Robb 

Christina South 

Anonymous 

Brian and Shelly Burwell 

Christine and Jon Hendrick 

Thirty One Gifts 

CFC-Southeastern Connecticut 

Jennifer Bevacqua Delaconcepcion 

Karey Circosta 

Darrick Mix 

Cynthia and William Aehlich 

Christopher Coyne 

Sandra and David Dawson 

DBA Jubilation Antiques 

David and Colleen DiFillippo 

Paul Finley 

Christy Fox 

Carol Loker and Barb Hamlin 

Elaine and Stanley Katz 

James Marino


Tom McDermott 

Janel and Andrew Taylor 

Hubert and Nancy Tolman 

CFC-North Central WV 

Claus and Kathleen Bekiers 

Randi Colatrella 

Barbara Dobozynski 

Kimberly and Joseph Fahy 

John and Elizabeth Jaskowiak 

Carolyn Kuhl 

Kenneth and Lynn LaVigne 

Debbie and Michael Meske 

Jennifer and Paul Miller 

Mark and Veronica Moniello 

Ocean Tools LLC 

Pickner Law O�ce, P.C. 

CFC-Huntington/Cleveland 

Robert Cannon 

Brenda Dekkers 

Allan and Joanne Jones 

Lilia Anderson 

Pete Anderson 

Angela Bowers-Plott 

Debbie Daggett 

Elizabeth and Cli�ord Dainty 

Margaret Durso 

Libby and Rob Fuller 

Sean and Denise Giuliani 

Heather Juenemann 

Christina Mani 

Jill Mazzola 

Dennis and Agnes O'Leary 

Heather and Steven Osterman 

John Palecek 

Fred and Barbara Prince 

Mary Sitztum 

Amira Suibi 

Annette Whitw 

Christopher Zoski 

CFC-Community Health Charities of NC 

CFC-United Way of Greater Dayton OH 

Abe and Lori Anderson 

Kristin Berg Hedrick 

Donato Antonucci 

Darrell Beutel 

Claire and Craig Cannon 

Nick Carosi 

Nicholas Carrasco 

Sean Casey 

Charlie Cocuzza 

Jennifer Coon 

Eric Dell 

2 0 Donors 

1 1 

Supporters $100 to $499 (Cont’d) 

Matthew Fore 

Susan Forrester 

Christopher Giblin 

Marybeth Gill 

Rodger Jackson 

Jason Kahara 

Laura Kenealy 

Laura Kopp 

Kenneth and Lauren Krivitzky 

Maureen O'Brien 

Bruce Oehler 

Pam Pick 

Dan Rowe 

Scott Schulte 

Jennifer Shaheen 

Sara Shannon 

Michael Tu�n 

Polly Walker 

Anthony Mongo 

A C General 

A Center for Electrolysis 

Vivien Abejo 

Jon and Peggy Abram 

Ronald and Cynthia Adams 

Janine Aeh 

Alameda County HR Services 

Alden Hill Builders 

Paul Allan 

Amerisure Insurance 

Sean Amery 

Leon and MaryJane Anderson 

Roberta and Donald Anderson TTEE 

Allen and Kathy Angel 

Mark and Angela Angel 

Daniel and Mary Angiolillo 

Debi Applebee 

Lorraine and Robert Arbuckle 

Rowena Arnold 

Karl and Patricia Ashman 

Tim and Dawn Atwood 

Alison Aughnay 

David Austin 

Franklin and Jane Austin 

Ronald and Eileen Ayotte 

Roman Bachli 

Michael Bailey 

George Bain 

Linda Baker 

Harlan and Birgit Baldwin 

Dorothy Ball 

James and Kristi Barker 

David and Stacey Barnett 


Penelope Barrett 

Coye and Kathleen Barton 

Mike and Jan Baum 

Sarahlee and Mark Beck 

Paul Bedard 

Wayne and Connie Behnken 

Bernadette Berardi - Coletta 

Antoinette Bevacqua 

Betty Bitting 

Robert and Fern Bitzer 

Bill Blanchard 

Blick & Sta� Communications 

Edward and Cynthia Blough 

Richard and Jackie Bolander 

Danny Bond 

Sanford and Susan Bosin 

Rick Bothwee 

Laura and Kevin Bower 

James and Laurel Boyd 

Timothy and Gina Boyle 

Todd Braidech 

Amy Branham 

Harold and Lorraine Brazier 

Myra Briggs 

Rosa Brigner 

Mary Brooks 

Jack and Donalyn Brophy 

Darwin and Hildy Brown 

George and Victoria Brown 

Robert and Claire Brown 

Virginia Moore and Melanie Brown 

Albert and Marcia Bryant 

David and Hildy Bubier 

Sheryl Buchbinder 

Darlene and Dwaine Buer 

Susan Bumpous 

Tammy Burns 

Charles and Margaret Bush 

Business Administrators & Consultants Inc. 

Jean Byers 

Phyllis and Ted Bysiewicz 

Stanley Bysiewicz 

Theodore and Kate Bysiewicz 

Erika and Michael Bzdel 

Jane Cannavale 

Anne and Tage Carlson 

Silvia Carmichael 

Carolina Home Loans 

Rosemary and Joseph Carr 

Steven and Barbara Carr 

Donald and Anessa Carroll 

James Carroll


Jeanne Carteaux 

Julie and Dan Casey 

Patrick and Filippa Casey 

Kathy and Calvin Cassady 

Susan and John Cassidy 

Bill and Judy Castle 

Dale Cendali 

Rich and Suzanne Ceppos 

Daniel Chamberlain 

Dennis and Renee Chang 

Judy Chapman 

Hy and Ruth Chausow 

Alex and Ann Chmura 

Robert and Janice Christ 

CIGNA Foundation 

Roger and Betty Clark 

Cleveland Tramrail 

Raymond Clyne 

Susan and Gary Coble 

Carol Cochi 

Michael Burns and Sybil Cohen 

Myra Cohen 

Coilcraft 

Joseph and Bernadett Coletta 

Jennifer Ba� and Adrian Connerty 

Patrick Connor 

Rosemary and Melvin Connot 

Allan and Dorothy Cornnell 

Thomas Costello 

Kevin Cote 

Joanne Cotter 

Jackie and Kay Coughlin 

William and MaryKay Coughlin 

Coughlin Construction LLC 

Je�rey and Janet Couvillion 

Betty Cox 

Duane and Caroline Coykendall 

Timothy and Teresa Cripsey 

CTL Title Insurance Agency Inc 

James and Bronda Curtis 

D W Van Dyke & Co., Inc. 

Jerry and Sherri Daale 

Wilbur and Lucille Daale 

Marcia Dahan 

Phillip D'Ambrisi 

Ron Daniels 

Nicholas Daraviras 

Julie Davidson 

Jim and Christa Davis 

Ray and Sherry Davis 

Michael De Gaetano 

Richard and Irma DeBrabander 

Dedicated Leasing Inc. 

2 0 Donors 

1 1 


John and Maria DeLillo 

Anthony Deluca 

Ronald and Deborah Demko 

Raymond and Tana Derrick 

Catherine DeSalvo 

Louis and Mary Ann DeSarno 

Brian and Sandy Dickey 

Claire Dimaiuta 

Christopher and Manda Dingley 

David Donaldson 

Thomas Dondore 

Peter Doten 

Dennis Douglas 

Erin Dove 

Robert Dremann 

Darryl and Suzen DuBre 

Linda and Richard Dull 

Amy Duncan 

Cherise Dunham 

Donna Dunne 

Rebecca Dunne 

Ann and Ned Durell 

Susan and Hugh Dykens 

Paul and Julieann Ebaugh 

Gene and Janet Eckles 

Donald and Jann Edwards 

Elizabeth Elkovich 

Amy and Chris Evans 

Exxon Mobil Corporation 

David and Judith Fabio 

Jeannine Fallon 

Evan Farrar 

Je� Bird and Eulalia Ferrer 

Phillip and Christine Field 

Finelli Ornamental Iron Co 

Mauro Brussani and Susan Finkelstein 

June and Eamonn Finnerty 

First Congregational Church Sunlighters 

Kevin and Roseanna Flanagan 

Harriet and Gerald Fleisher 

Liz and Bruce Fletcher 

Colin Flynn 

William and Suzanne Forsythe 

Christal Forti 

Angela Francavilla 

Frank M Oley & Associates Inc 

Stewart and Barbara Frazier 

Stephen Frey 

Stephen and Madalyn Friedberg 

Bill and Kathy Friend 

Heinrich and Anna-Maria Froehlich 

John and Vicki Fulks 

Jennifer Gallamore 


Greg and Tammy Galloway 

Linda and Joseph Gambardella 

Christy and Josh Gardner 

Tom and Joan Garrett 

Megan and Scott Gaupp 

Ruth Gaustad 

Ronald and Carol Giacobbe 

Raymond Giblin 

Leonard and Judy Gingerella 

Colleen Girard 

Andrea Glass 

Carolyn Gluhanich 

Julia and Mark Gluhanich 

Go Red LLC 

Nicholas and Ivy Go�redo 

Je�rey Gold 

Erika Good 

Carol Goodno 

Donald and Peg Goranson 

Lori Gordon 

Christopher Graham 

Brian Gray 

Lisa and TJ Graziano 

Kathleen Green 

Carolyn Green�eld 

Ed and Kay Gri�th 

Janice and Paul Griggs 

Angela and John Grillo 

Donald and Glenda Grimm 

Ann and Paul Grussing 

David and Jayne Guarino 

Bruce and Kristin Guillemette 

Dan Guinipero 

Jean and Joe Gunning 

Gym Hutt Gymnastics Inc. 

Thomas Gysin 

Hair by Jill Miglia 

Peter Halis 

Tom Hall 

Erich and Pauline Haller 

Bill and Marolyn Halverson 

Michael Hammond 

Melvin and Jane Handwerger 

Samuel Handwerger 

Gretchen Hanne�eld 

Chris and Tonya Hardman 

Martin Hardy 

Julie Harmon 

Benjamin Harris 

Francis and Joan Hart 

Stephen and Karen Harvey 

Robert and Robin Hasenstab


Floyd and Jo Hatcher 

John and Jean Hauser 

Howard and Mary Elaine Hayden 

Daniel and Frances Headley 

James and Jo Ann Heck 

Patricia Heinze 

Ralph and Jean Heller 

Dan Hellickson 

Barbara and Ken Henderson 

Debbie Henderson 

W Tom Henderson 

Peter and Shawn Henry 

Ozmer Henry Jr., MD 

Dave and Edie Herb 

Karla Hertzog TTEE 

Christopher and Heather Hetrick 

Kenneth and Lindy Hetrick 

Michael and Martha Hetrick 

Jane Hew 

Vanessa Hew 

Andrea Hidalgo 

Gilda Hill 

Terrence and Louise Hillery 

Janet and Michael Hilling 

Gary Ho 

Jason and Denise Hodges 

Julianne Ho� 

Bryan and Dorothy Hollenbach 

Lisa Hollins 

Cindy and Jimmy Holtho� 

Ann Eliot Hon 

Byron and Betty Hopkins 

Wendy Hopkins 

James Howard 

Carol and Robert Hu�man 

Debbi Hughes 

John and Cathleen Hulse 

Billy and Kathy Hyatt 

Kristin Ianni 

Stephen Inbusch 

Mary Ingalls 

Installation Systems 

IR Telemetrics Inc 

Natasha and Yuriy Ivanenko 

Mary Izett 

Martha McDonald and Art Jakubiak 

William and Donna Jallick 

James P Croke Associates 

Tobias and Dorla Jaramillo 

Marvin and Yvonne Jassie 

JB Sports LLC 

Marcia and Charles Jewell 

2 0 Donors 

1 1 


Karen and Tim Jobe 

Claire and Je� Johnson 

David and Sandra Johnson 

Esther Johnson 

Keith and Donna Johnson 

Sherri and Kirby Johnson 

Jared Johnson CPA PLLC 

Colette and Eric Joncas 

James Jones 

Margaret and Dan Jones 

Kevan Joyce 

Ravi Kagalavadi 

Art and Beth Kane 

Larry Karpinski 

Sean and Patricia Keating 

Marvin and Dorothy Kelly 

Je�ry and Patsy Kennedy 

Al and Linda Kennett 

David and Tammy Kenney 

Mark and Diane Kenney TTEES 

Cathy Kerby 

Keybank Foundation 

Rodney and Cindy Kinzinger 

William and Diana Kirchho� 

Glenn and Sandra Kitchen 

Edward and Karen Klarman 

Matthew and Michele Klauber 

Terry or Marabeth Kleczinski 

Douglas Koeltzow 

Mary and Ernie Kolar 

Shelly Kozacek 

Jeanne Krautwurst 

Florence Kreacic 

Luis and Judith Kubichek 

Elizabeth Kucharski 

Carol and Jack Kumer 

L & D Electric Inc. 

Thomas and Carole LaBossiere 

Mary Lagana 

Jon Lamoureux 

Lionel and Cynthia Lamoureux 

Prentice Lantzer 

Andrea Lari 

Loren Larsen 

Erin and Joseph Lauer 

Lawrence E Fisher Accounting 

George Layburn 

Rand Layman 

Dolores Legerski 

Oran and Meygal Leiba 

Robert and Marian Lenfestey 

Cynthia and Donald Lens 


Peter and Ellen Lenza 

Saundra and Fred Levan 

Frances and Randall Lewis 

John and Carol Lietzow 

Gustave and Joyce Lignoul 

Susan and Robert Lindahl 

Dennis and Jennifer Lindsey 

Tim and Carol Lindsey 

Robyn Lionetti 

Dave and Debbie Littere 

Joi Lively 

Kevin Livingston 

Samuel and Helene Lizerbram 

Mildred and John Lombardi 

John Long 

Chester and Roberta Lonnquist 

Nancy and Steven Loosbrock 

Lisa Lopez 

Robert Lorenzini 

Thomas and Sheryl Love 

Melinda and Josh Lucas 

Norma Macasieb 

Suzette LaVigne and Eric Macks 

John and Esther Magee 

Dennis Malicki 

Larry and Sallie Mallach 

Carolyn Malo 

Judith and Leonard Mandel 

John and Virginia Manning, Jr. 

Jessica, Nick and Helene Manoian 

Michael and Lin Marchitelli 

Jeanne Markle 

Robert and Lynn Markus 

Nicole Martin 

Brian Martini 

Lucile Martino 

Catherine Masi 

Gina Mattera 

Carol Matza 

Stewart and Bronnie Maurer 

Karen Maxwell 

Erica Maxwell-Daniel 

M-C Modi�cations LLC 

Angela and John McBride 

McCall Family Trust 

Marie McCarthy 

Tanya and Kevin McCloskey 

Julia McClure 

Susan McConathy 

Michael and Amanda McConnell 

Mary and James McCready 

Dolores McCullough


Patrick McDonald 

McDonald and Rogers LLC 

Florence McErlane 

Joan McErlane 

Patrick McEvoy 

Linda McGee 

Pauline McIlrath 

Lisa McKean 

George and Dorothy McLaughlin 

Shawn McLaughlin 

Barbara McManus 

Joseph McManus 

Randall McPherson 

Lisa and Stephen McQueen 

Carol and Richard Medina 

Roy and Mable Meeks 

Mercy Medical Center 

John and Karen Meslow 

Kelly Scanlon and David Michaud 

Russell Miles 

Carly Greer and Kerry Miller 

John and Margie Miller 

Tom and Barb Minton 

Jennifer Miramant 

Gerald and Janice Mitchell 

Kelly Mitchell 

Terry and Debbie Mleczewski 

Mark Montalto 

Maureen Moons 

Teri Moraga 

Robert and Diane Morse 

Helaine Moyse 

Scott and Amber Mudlin 

David Mueller 

Tim and Bobbi Mukoda 

Joyce Mullane 

Will Murray 

Robert and Madeline Nappen 

National Builders Inc 

Navigon Financial Group Inc. 

Susan Neal 

Marie Newman 

Ralph Noistering 

Charles Nolte 

Spencer and Elizabeth Nordfors 

Joshua Normand 

Normandy 

Joseph O'Callaghan 

Bernie and Millie O'Connor 

Winifred Okumura 

Mark and Amy Oldenburg 

Adrian and Nancy O'Leary 



Michael and Lisa O'Leary 

Nate and Barbara Olson 

Rodney Olson 

Ray and Ruth Organ 

Noorjehan Osman 

Geraldine Ostrov 

Sharon and Jim Overmier 

Jim Owen 

Rick and Peggy Palecek 

David Palma 

Lloyd and Alice Parcell 

Beth and Jerry Parker 

Yolanda and Robert Parker 

James Patchen 

Chris and Shelby Pate 

Jerri Pate 

Patrick T. McCarthy, Realtor 

Vernon and Nancy Paulson 

Monica Pearson 

Tricia Pearson 

Patricia Pelszynski 

Mort and Joy Perchick 

Steve and Verla Percy 

Michael Perkins 

Richard and Patricia Perlman 

Lillian Perrone 

Stephen Petke 

Mel and Chris Pfei�er 

P�zer Foundation Matching Gifts Program 

David and Elizabeth Phillips 

Sean Phillips 

Thomas and Allison Pierson 

Daniel and Kim Pinda 

Carol Plummer 

Lyle and Ronna Podber 

Ronald and Carol Pohl 

Je� Pomeroy 

Jay Price 

Je� and Claudia Price 

Christina Proano 

Elizabeth Prochazka 

Mike Proia 

Gerald and Helen Punches 

Timothy and Andrea Radigan 

Chris Rahimian 

Ralph A Macks Insurance Agency Inc. 

Harold and Diane Ranck 

Pamela Raper 

Jennifer Ray 

Shirley and William Reardon 

Charles Reckner, Jr. 

Otto and Polly Redanz 


Dilsia and Claudio Reyes 

George and Janice Richardson 

Frank Rickards III 

Joe Rickenbach 

Pete Rivera 

Roche Brothers Supermarkets Inc. 

Patricia Rodrick 

Gerald Rosenberg 

Tedd Rosenfeld 

Cindy Roth 

Eric Rouse 

RT Electric LLC 

Je� Ruden 

James Rudolph 

Stephen and Laura Rusnak 

Natalie Saatho� 

Elizabeth Salerno 

Marsha Samuel 

Dorothy Sattler 

Anthony Savarese 

Patti Saylor 

Thomas and Mary Scallen 

Joseph and Anna Scanapicco, Jr. 

Barbara and Alfred Schiavetti 

Betty Schi� 

Kurt Schloss 

Jeanette Schoen 

Sandra and Ken Schoen 

Diane and Eric Scholl 

Donna Schramm 

Wayne and Anna Schuberg 

Agnes Schultes 

Eric Schulze 

Terry and LeAnn Schuveiller 

Frank and Julie Scott 

Marcia Scott 

Rick and Caryn Segall 

Melissa and John Selca 

Gloria and Jim Servais 

Mark Severson 

Susan Shafer 

Dipti Shah 

Vernon and Mary Lou Shansby TTEES 

Gene and Beverly Shapert 

Deborah Shapiro 

Ramona and Chuck Shawver 

Mary Shea 

Curtis Shelley 

Will Dishong and Angela Shelley 

Adam and Kylie Shellstrom 

Reuben and Denise Shipp 

Donald and Monica Shores


James and Susan Shortley 

Jacqueline and Gary Shuk 

Barbara Siegfriedt 

T.R. and Carol Ann Simmons 

Henry and Susanne Singer 

Siouxland Propane Co 

Katherine Slubowski 

Michael Smith 

Kevin Smythe 

Dona and Charles Snead 

Clara and Warren Snover 

Alan and Carolyn Snyder 

Lee Ann and Roger Souders 

Floyd Spechler MD PA 

Mary Speer 

Keith Spriggs 

St. Pius X Church Corp 

Amy and Robert Stack 

Lisa and Robert Sta�ord 

John and Krista Stapleton 

Amy Starkman 

Jim Stasny 

Tammi and Gary Steinberg 

Damon Stephens 

Stepping Out Inc. 

Dwight Sterling 

Amy and Richmond Stevenson 

Robert and Anny Stoeck 

Douglas and Lynn Stokke 

Kevin and Julia Stout 

Eric and Tammy Stratton 

Peter and Mary Suarez 

Kit and Molly Sumner 

Darryl and Daphne Sumrall 

Carol Sweeney 

Ruth Deutscher and Chris Sweeney 

Evan and Jennifer Sylvester 

Kacper Szarek 

Tailor Maid Cleaning Services 

Phoebe Tanner 

James and Karen Tarbell 

John and Carole Tattersall 

Terry Taylor 

Joseph Tedone 

Elizabeth and Steven Tengler 

Douglas and Wanda Terrell 

David Terry 

The Benedict Insurance Agency Inc 

The Dingley Family Trust Revocable Trust 

The Turlington Group Inc 



Thieme Medical Publishers Inc 

George and Carole Thomassy 

Don Thompson 

Mary and John Thompson 

Thomas and Tawanna Thompson 

Mark and Andrea Tilford 

TN-PWSA 

Linda Todd 

Tootsie Roll Industries Inc. 

Carmen Torres 

Laurier and Janet Tremblay Jr 

Diane and Bruce Trimble 

Truesdell Oil Inc 

TTEE for Marianna Emanuele 

Robert Blum and Wendi Tuchfeld 

Powell and Joane Underwood 

UnitedHealth Group Campaign Match 

Darren and Donna Unterberger 

Scott and Christine Utech 

John Vaghini 

Marc and Tanya Valenti 

John and Janice Van Dyck 

Tim Van Engen 

Tammy Veenstra 

Maurice and Helen Vermeulen 

Villa Lighting Supply 

Jessica Vincent 

Marion and Jorge Vizoso 

Elisabeth Voce 

Ann and William Voll 

Meredity Waga-Perez 

William Wall 

Lisa and Kevin Walsh 

Martin and Dolores Walsh 

Mary and Gerard Walsh 

Terry and Keith Warburton 

Jack and Louise Warden 

James and Sherri Watters 

Richard and Eleanor Weiner 

Molly and Mike Wells 

Roger and Sara Wenner 

Allan and Helen Werst 

Roger and Ronda West 

Gale and Esther Westburg 

Kevin and Kerri Westburg 

Mark and Faye Westwood 

Marge Wett 

Charlotte and Ronnie Wheeler 

Doug and Tina Whittenburg 

Arlene Williams 


Barbara Williams 

Jacqueline Williams 

John Wilson 

Kathleen and David Wilson 

Elwood and Mary Jane Wissmann 

Gabrielle Wohlman 

Donald and Ruth Wojna 

Ron and Rowene Wolfer 

Janice and Jim Wollam 

Bob and Daylene Wood 

Peter and Kathleen Wyka 

Brian and Noreen Wynne 

Ray and Lynn Yasser 

Madeline Young 

Pamela Young 

YourCore Pilates 

Amy Zaccagnino 

Martin Zak 

Robert Zerden 

Zig Sibit 

Mercedes Zimmer 

Judith Zocchi 

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

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 o�ce to notify us of any 

corrections to the list of donors. 

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

2 0 1 1 

Board of Directors and Advisory Boards 

Directors and O�cers 

Chair—John Heybach, Ph.D., Chicago, IL 

Vice Chair—Ken Smith, Pittsburgh, PA 

Secretary—Julie Doherty, Tallahassee, FL 

Treasurer—Bert Martinez, Bradenton, FL 

David Agarwal, MD, Zionsville, IN 

Michael Alterman, Atlanta, GA 

Greg Cherpes, M.D., Pittsburgh, PA 

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

Michelle Holbrook, Lehi, UT 

Steve Leightman, Cherry Hill, NJ 

Jim Koerber, Corydon, IN 

Jackie Mallow, Oconomowoc, WI 

Jim Koerber, Corydon, IN 

Lisa Thornton, Salt Lake City, UT 

Michelle Torbert, Homestead, FL 

Lisa Thornton, Salt Lake City, UT 

Mary K. Ziccardi, Cleveland, OH 

Scienti�c 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., University of California, San Francisco, CA 

Anastasia Dimitropoulos, Ph.D., Case Western Reserve Univ., Cleveland, OH 

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 

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., M.B.A. Johns Hopkins School of Med., Baltimore, MD 

David Stevenson, M.D., University of Utah, Salt Lake City, UT 

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 

Gregory Cherpes, M.D., The Children’s Institute, Pittsburgh, PA 

Marilyn Dumont-Criscoll, M.D., Ph.D., UF Health Science Ctr., Gainesville, FL 

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 Hosp., IU School of Med., Ind., IN 

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

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

Todd Porter, M.D., M.S.P.H., Children’s Medical Center, Denver, CO 

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

Harold J.P. van Bosse, M.D., Shriners Hospital for Children, Philidelphia, PA 

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

Liaison Members: 

Suzanne B. Cassidy, M.D., University of California, San Francisco, CA 

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

Ken Smith, Board of Directors, PWSA (USA) 

Care Providers Advisory Board 

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

Kate Beaver, PWSA (USA), Sarasota, FL 

Patrice Carroll, Advocates, Inc., Framingham, MA 

Je� Covington, Catholic Charities Services, Albany, NY 

Steve Drago, ARC of Alachua County, Gainesville, FL 

B. J. Go�, Go� Associates Disability Consultants, Spring�eld, MA 

Kim Stevens, Volunteers of America, Tulsa, OK 

David Wyatt, PWSA (USA) 

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

Adults with PWS Advisory Board 

Shawn Cooper, Georgia — Lauren Lange, Georgia — Abbott Philson, Maine 

Conor Heybach, Illinois — Kate Kane, Maryland — Brooke Fuller, Michigan 

Andy Maurer, South Carolina — Margaret Miller, Pennsylvania

2 0 1 1 Statement of Activities

Crisis 

Intervention and 

Family Support 

18% 

PWSA (USA) 

Breakdown of Services Provided 

Management 

and General 9% 

Conference 12% 

Fundraising 5% 

Medical and 

Research 

35% 

My husband and I are members of PWSA-USA 

and have two sons with PWS. 

There was an article on your website entitled 

"Guidelines on Scoliosis Monitoring and Treatment 

for Children with Prader-Willi Syndrome" by Dr. 

Harold J. P. van Bosse from Shriners in 

Philadelphia. We have found that article 

invaluable during the course of our son's treatment 

and have shared it with two well-known 

orthopedic surgeons, as well as other doctors who 

were interested in the special needs of children 

with PWS and scoliosis. 

2 0 1 1 Financial Review 

Awareness and 

Education 

21% 

$309,380 

I would like to thank you very much for your answer and special 

thanks for the articles you have sent. They are a big help already for 

us. I have just read the �rst couple of pages, but you have helped us 

tremendously already! The article about the "chronic sorrow" is very 

true and real. Our son was diagnosed with PWS 6 months ago, but 

from that time our life is very di�erent and we are going through very 

tough times with my husband. We were unable to explain what is 

happening with us, we did not understand, and I think we did not 

even had time and energy to think and analyse it ( we are also having 

a 10 month old baby..) but you with this article enlightened us. We 

were reading your article about the grief and it's stages and we have 

realised that we are going through exactly on the same road you 

have described. It have already helped us to undersand ourselfes and 

each other, what is very important in these extremely hard 

times..Thank you again Janalee. Your son Matt is amaizing, 

congratulations for YOU. Whising you all the best! 

Kind Regards from Hungary, 

Donated Professional Time 

($404,680 total) 

$43,800 

Medical and Research Crisis Intervention and 

Family Support 

$28,250 $23,250 

Awareness and 

Education 

Management and 

Administration

~ Dedicated to the memory of Marcia Dunn~ 

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

2011 Annual Report FINAL.pub - Prader-Willi Syndrome Association

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