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October 2012 - The ALS Association Greater Sacramento

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<strong>October</strong> <strong>2012</strong><br />

Beth Hassett, Board President,<br />

Amy Sugimoto, Executive Director<br />

Amy Sugimoto,<br />

Executive Director<br />

Letter from the Executive Director<br />

Thank you to everyone that came out to<br />

support the 12th Annual Walk to Defeat <strong>ALS</strong><br />

on Saturday, <strong>October</strong> 6, <strong>2012</strong> at Raley Field!<br />

Teams, walkers, volunteers and staff felt the<br />

love, spirit, and commitment of the community to find an effective<br />

treatment for <strong>ALS</strong>, while enjoying the beautiful fall weather!<br />

<strong>The</strong> fun-filled day has to date raised $198K toward our goal of<br />

$225K to support the programs and services offered by <strong>The</strong> <strong>ALS</strong><br />

<strong>Association</strong>, <strong>Greater</strong> <strong>Sacramento</strong> Chapter.<br />

It’s not too late to help us achieve our goal. We are only $27K<br />

away from our target. If every participant donated $23.97 we’d<br />

be there! If you have a matching gift program at your company,<br />

please get those gifts into the Human Resources Department. If<br />

you have donations that you haven’t mailed in, do so today. Every dollar counts!<br />

Thank you all for helping our Chapter provide the highest level or programs and services for <strong>ALS</strong><br />

patients and caregivers in our community. With your help we’ll wipe out <strong>ALS</strong>!<br />

Sincerely,<br />

Goal:<br />

$225,0000<br />

Raised to date:<br />

$198,000<br />

Click here<br />

to make a donation and<br />

support the local<br />

programs and services<br />

offered by <strong>The</strong> <strong>ALS</strong><br />

<strong>Association</strong>, <strong>Greater</strong><br />

<strong>Sacramento</strong> Chapter.<br />

PATIENT CALL TO ACTION: FIGHT <strong>ALS</strong>. SIGN UP FOR THE NATIONAL <strong>ALS</strong> REGISTRY<br />

It's been two years since the federal government implemented the National <strong>ALS</strong> Registry. So many of you<br />

have enrolled in the Registry and provided researchers with the information they need to further unlock<br />

the mysteries of Lou Gehrig's Disease. But 90 minutes from now, another person will be diagnosed with<br />

<strong>ALS</strong>. That's why we can never stop spreading awareness of the National <strong>ALS</strong> Registry and encourage those<br />

fighting this disease to enroll.<br />

<strong>The</strong> National <strong>ALS</strong> Registry may be the single largest <strong>ALS</strong> research project ever created and is designed to<br />

identify <strong>ALS</strong> cases from throughout the entire United States. Most important, the Registry is collecting critical<br />

information about the disease that will improve care for people with <strong>ALS</strong> and help us learn what causes<br />

the disease, how it can be treated and even prevented.<br />

<strong>The</strong> <strong>ALS</strong> <strong>Association</strong> led the fight to establish the National <strong>ALS</strong> Registry, working with Congress to enact the<br />

<strong>ALS</strong> Registry Act and secure federal funding to design, build and implement the National <strong>ALS</strong> Registry at<br />

the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/<br />

ATSDR). If you haven't done so already, please enroll in the Registry today!<br />

<strong>The</strong> <strong>ALS</strong> <strong>Association</strong>, <strong>Greater</strong> <strong>Sacramento</strong> Chapter<br />

<strong>October</strong> <strong>2012</strong> Newsletter<br />

Patients • Caregivers • Families • Donors<br />

Proudly serving 24 counties in Northern California<br />

from the Sierras to the Oregon Border<br />

1


Support Group Meetings and Special Events<br />

Upcoming Support Group Meetings in Northern CA.<br />

SACRAMENTO (Dow ntown)<br />

Sutter Cancer Center<br />

STOCKTON (New Location)<br />

Call 916-979-9265 for details.<br />

December 6th, <strong>2012</strong><br />

10:30 am—12:30 pm<br />

P<strong>ALS</strong> & C<strong>ALS</strong><br />

Light Refreshments served<br />

(Combined Session)<br />

In this issue:<br />

2800 L St reet<br />

<strong>Sacramento</strong>, CA 95816<br />

Breakout Session<br />

Saturday, <strong>October</strong> 20<br />

10:30-12:30<br />

Holiday Celebration<br />

Saturday, November 17th<br />

10:30-12:30<br />

SACRAMENTO (Fulton Ave)<br />

Carlton Plaza<br />

1071 Fulton Avenue<br />

<strong>Sacramento</strong>, CA 95825<br />

Thursday, September 13th<br />

Thursday, <strong>October</strong> 11th<br />

Support Group Meetings…………….…….2<br />

Walk to Defeat <strong>ALS</strong> Photos..………….….3<br />

New Research……………….….…………..….4<br />

Ask the Doc………..….……….………………..5<br />

Research.………………...….……….…..……..6,7<br />

Resources………….…………………..………...9<br />

Walk to Defeat <strong>ALS</strong>...………………….…..10,11<br />

Walk to Defeat <strong>ALS</strong> .…………………….….12,13<br />

Thank you’s……………………………..……...14<br />

CHICO (New Location)<br />

Enloe Home Care<br />

1390 East Las sen Ave<br />

Chi co, CA 95973<br />

Please call office for more<br />

information.<br />

P<strong>ALS</strong> & C<strong>ALS</strong><br />

Holiday Celebration!<br />

Please Join us on<br />

Saturday, November 17th<br />

as we celebrate the<br />

holiday’s.<br />

Sutter Cancer Center<br />

2800 L Street<br />

<strong>Sacramento</strong>, CA.<br />

Time: 10:30-Noon<br />

This is a celebration of<br />

love, giving, holiday’s and<br />

cheer. Festivities include<br />

breakfast and our<br />

traditional white elephant<br />

gift exchange.<br />

RSVP to Nancy @<br />

nwakefield@alssac.org<br />

Or call 916-979-9265<br />

UPCOMING EVENTS:<br />

Redding Walk for a<br />

Cure!<br />

Saturday, <strong>October</strong> 13, <strong>2012</strong><br />

Lema Ranch, Redding<br />

Call 916-979-9265 for more<br />

information<br />

Second Saturday<br />

Saturday, November 10,<br />

<strong>2012</strong><br />

West <strong>Sacramento</strong><br />

Community Center<br />

Art, Wine, Live Music<br />

5-10 pm<br />

Free admission, donations<br />

welcome<br />

5th Annual Run for a<br />

Cure<br />

Roseville, Sculpture Park<br />

Saturday, January 5, 2013<br />

2


Walk to Defeat <strong>ALS</strong>—Thank you for your support!<br />

3


Recent Research<br />

Recent Study Finds Connection Between <strong>ALS</strong> and Spinal Muscular Atrophy<br />

A study published in the September 28 edition of Cell Reports indicates that <strong>ALS</strong> and another disease involving motor<br />

neurons called spinal muscular atrophy (SMA) are linked at the molecular level. <strong>The</strong> research, led by Robin Reed,<br />

Ph.D., Professor of Cell Biology at Harvard Medical School in Boston, Massachusetts, offers new insights into the<br />

disease process in both diseases.<br />

<strong>ALS</strong> affects adults; SMA affects children. Both diseases are caused by the death of motor neurons, cells that control<br />

muscle and allow movement. One cause of <strong>ALS</strong> is a mutation in a gene called FUS. SMA is caused by mutation in a<br />

gene called SMN. In this new study, the team, which involved scientists from the United States, the United Kingdom<br />

and China, investigated the interactions of the FUS protein with the SMN protein. <strong>The</strong>y found that the two proteins<br />

physically link up in the cell nucleus. That discovery was the first indication that a protein involved in <strong>ALS</strong> interacts<br />

with the protein involved in SMA. <strong>The</strong> finding suggests that this pathway may be disrupted in both diseases.<br />

“This new finding will help accelerate the understanding of the causes of <strong>ALS</strong> because scientists have now identified a<br />

critical link between two very different diseases that both cause the degeneration of motor neurons. That link is<br />

likely to play an important role in the <strong>ALS</strong> disease pathway,” said <strong>The</strong> <strong>ALS</strong> <strong>Association</strong> Chief Scientist, Lucie Bruijn,<br />

Ph.D.<br />

<strong>The</strong> <strong>ALS</strong> <strong>Association</strong> contributed funding to support two of the researchers involved in the study through its Translational<br />

Research Advancing <strong>The</strong>rapies for <strong>ALS</strong> (TREAT <strong>ALS</strong>) program. <strong>The</strong> program supports a diverse portfolio<br />

of research every year in order to find treatments and a cure for Lou Gehrig’s Disease. Read our press release on<br />

this recent study.<br />

<strong>The</strong> <strong>ALS</strong> <strong>Association</strong> is pleased to congratulate Tom Maniatis, Ph.D., the Isidore S. Edelman Professor of Biochemistry<br />

and Chair of the Department of Biochemistry and Molecular Biophysics at Columbia University Medical Center,<br />

who will receive the <strong>2012</strong> Lasker-Koshland Special Achievement Award in Medical Science from the Lasker Foundation<br />

later this month.<br />

Dr. Maniatis serves as Chair of <strong>The</strong> <strong>ALS</strong> <strong>Association</strong>’s Scientific Advisory Board. He has been instrumental in helping<br />

<strong>The</strong> <strong>Association</strong> shape its Translational Research Advancing <strong>The</strong>rapies for <strong>ALS</strong> (TREAT <strong>ALS</strong>) program, through<br />

which <strong>The</strong> <strong>Association</strong> funds a diverse portfolio of research to find treatments and a cure for Lou Gehrig’s Disease.<br />

“We are thrilled to learn that Dr. Tom Maniatis will receive this prestigious award and honored that he has played<br />

such an integral role in shaping our own research programs,” said Lucie Bruijn, Ph.D., Chief Scientist for <strong>The</strong> <strong>ALS</strong><br />

<strong>Association</strong>. “<strong>The</strong> <strong>ALS</strong> community is fortunate to have such a distinguished investigator committed to understanding<br />

and finding treatments and a cure for this devastating disease.”<br />

<strong>The</strong> Lasker Awards are among the most respected science prizes in the world. <strong>The</strong> Lasker-Koshland Award honors<br />

scientists whose contributions to research are of unique magnitude and have immeasurable influence on the course<br />

of science, health or medicine. <strong>The</strong> awards will be given out on September 21 in New York City.<br />

Dr. Maniatis' career, which has included positions at Harvard, Cold Spring Harbor Laboratory, and Cal Tech, has<br />

focused on the way human genes are switched on and off in cells. He pioneered methods for understanding gene<br />

expression, which led to the development of new therapies to treat human genetic diseases.<br />

Throughout the years, Dr. Maniatis’ laboratory has become more and more involved in <strong>ALS</strong> research, and he and his<br />

team have made significant contributions to the field of <strong>ALS</strong>. <strong>The</strong>se contributions include his work with embryonic<br />

stem cells derived from mouse models of <strong>ALS</strong>, and more recently induced pluripotent stem cells derived from <strong>ALS</strong><br />

patients. Several of these important studies were funded in-part by <strong>The</strong> <strong>ALS</strong> <strong>Association</strong>.<br />

One of the researcher’s in Dr. Maniatis’ lab, Monica Carrasco, Ph.D., received the <strong>The</strong> Milton Safenowitz Post-<br />

Doctoral Fellowship for <strong>ALS</strong> Research Award, which is made possible by the generosity of the Safenowitz family<br />

through the <strong>Greater</strong> New York Chapter of <strong>The</strong> <strong>ALS</strong> <strong>Association</strong> and is in memory of Mr. Safenowitz, who died of<br />

<strong>ALS</strong> in 1998.<br />

<strong>The</strong> <strong>Greater</strong> New York Chapter will honor Dr. Maniatis at its 18th Annual Lou Gehrig Sports Awards Benefit on<br />

November 7, <strong>2012</strong>, with the <strong>2012</strong> Jacob K. Javits Lifetime Achievement Award.<br />

4


Ask the Doc—Dr. Edward Kasarakis<br />

Q: My father died of <strong>ALS</strong> 28 years ago, and subsequently, my first cousin also died of the<br />

disease. Both were diagnosed in their late 40’s, and I’m 47 but not having symptoms. Genetic<br />

testing was not done prior to their deaths. Is there any way to know if we’re dealing<br />

with a case of familial <strong>ALS</strong>?<br />

A: <strong>The</strong> short answer to your question is yes, there are ways to help you know what<br />

you’re dealing with. But there’s a lot you should know before deciding if genetic testing is<br />

right for you and for your family.<br />

Dr. Edward<br />

Kasarskis<br />

First, a little background. <strong>ALS</strong> is hereditary in just a small percentage of families. Only about 10% of<br />

people with <strong>ALS</strong> have a close family member with the disease. In such cases, it’s called “familial <strong>ALS</strong>”<br />

or “F<strong>ALS</strong>” for short.<br />

To date, research from around the world has identified at least 8 different genes associated with<br />

F<strong>ALS</strong> and the list is expanding. <strong>The</strong> first gene identified was SOD1, but it is now believed that mutations<br />

in the C9orf72 gene might be the most common. Others include FUS and TARDP.<br />

You can get many more details about genetics and heredity in <strong>ALS</strong> by clicking here. Don't let some<br />

of the technical and scientific detail intimidate you. Commercial testing is available for most of these<br />

genes (but it’s very expensive). You should know that any single family with F<strong>ALS</strong> has only one mutation<br />

in one of the genes, so if you are like most people, you probably will need some professional<br />

advice (more about this later).<br />

In a situation such as yours, the best first step is to talk with a neurologist or genetic counselor<br />

about your family history. He or she will explore the details of your family history with you and provide<br />

you a better understanding of whether you’re actually dealing with familial <strong>ALS</strong>.<br />

But let’s just say the genetic counselor or neurologist suggests you get genetic testing. <strong>The</strong>re’s still<br />

much more to consider in order to make a truly informed decision. You should first take a step<br />

back and ask yourself why you’re interested in getting a genetic test in the first place. Perhaps<br />

you’re wondering if you should have children? Or, if your children should have children? Or maybe<br />

you find you’re worrying about the disease and whether or not you are going to get it, and that’s<br />

causing you constant anxiety? Or perhaps others in the family are wondering? A genetic counselor<br />

will help you evaluate your concerns and decided whether genetic testing will likely be helpful to<br />

you.<br />

Sending blood off to test for these genes is easy; answering these questions may be very hard.<br />

<strong>The</strong> fact that you asked the question in the first place indicates to me that there are some issues<br />

that need further exploration with your neurologist and/or genetic counselor. In the end, you may<br />

chose not to have any genetic testing.<br />

Even if you get a genetic test and find out you have one of the <strong>ALS</strong> genes, you may still end up with<br />

more questions than answers because:<br />

Having one of the genes for F<strong>ALS</strong> does not necessarily mean that you’ll develop <strong>ALS</strong>.<br />

If you have a F<strong>ALS</strong> gene, there’s no way to know at what age you might develop symptoms.<br />

<strong>The</strong>re are currently no preventative treatments.<br />

From my point of view, unless someone has several generations involved -- a grandparent, a parent,<br />

an uncle or an aunt, a brother or a sister -- genetic testing may not offer the information you’re<br />

looking for. Good luck on your quest.<br />

For more detailed information on the genetics of F<strong>ALS</strong>, see the Q & A on <strong>The</strong> <strong>ALS</strong> <strong>Association</strong><br />

website. If you would like to submit questions for a future Q & A, please send your questions to theexchange@alsa-national.org.<br />

Please understand that 5 we won’t be able to address all questions and we won’t<br />

be able to respond to individuals personally.


Recent Research<br />

Researchers Find Genetic Region Influencing Age at Which People Develop <strong>ALS</strong><br />

<strong>The</strong> <strong>ALS</strong> <strong>Association</strong> announced today that an international consortium of researchers<br />

it convened and funded has identified a region on chromosome 1 that strongly influences<br />

the age at which an individual develops amyotrophic lateral sclerosis (<strong>ALS</strong>). For<br />

the first time, scientists have found that people with <strong>ALS</strong>, who have a specific genetic<br />

signature within this region on chromosome 1, had an age of onset that is approximately<br />

two-and-a-half years earlier than those without it. <strong>The</strong> study was funded in part<br />

by <strong>The</strong> <strong>ALS</strong> <strong>Association</strong> and published today in Neurobiology of Aging.<br />

“<strong>The</strong> discovery of a region or genetic center on chromosome 1 that influences the age at which a person<br />

develops <strong>ALS</strong> is critically important for understanding the disease process,” said Lucie Bruijn, Ph.D., Chief<br />

Scientist for <strong>The</strong> <strong>ALS</strong> <strong>Association</strong>. “<strong>The</strong>re are many pathways that lead to <strong>ALS</strong>, and this new discovery suggests<br />

that there may be common factors to all of these pathways, which may enable researchers to develop<br />

new treatments that help slow or stop the disease.”<br />

<strong>The</strong> study examined the DNA from more than 4,000 <strong>ALS</strong> patients and 5,000 control subjects of Caucasian<br />

origin. Researchers found that those individuals with a specific genetic signature within a region on chromosome<br />

1 had an age of onset approximately two-and-a-half years earlier (56.5-years-old) than those<br />

without the genetic signature (59-years-old). In addition, the study confirmed known genetic risks for <strong>ALS</strong><br />

and suggested novel regions that merit more study.<br />

“Although a 2.5 year delay in the onset of <strong>ALS</strong> may not seem large, it is very important as it is comparable<br />

to the average survival time once diagnosed with <strong>ALS</strong>. <strong>The</strong> fact that it is associated with such a significant<br />

change in the age of <strong>ALS</strong> onset hints at a role in the rate of progression, maybe in accelerating the disease<br />

process,” said Dr. Langefeld. “<strong>The</strong> consistency of this locus’ effect across the 13 Caucasian cohorts is remarkable<br />

and underscores its broad impact.”<br />

This new research was conducted by <strong>The</strong> International Consortium on Amyotrophic Lateral Sclerosis Genetics<br />

(<strong>ALS</strong>GEN), and analyzed by Carl Langefeld, Ph.D., of Wake Forest Baptist Medical Center in Winston-<br />

Salem, North Carolina. This work was supported by <strong>The</strong> <strong>ALS</strong> <strong>Association</strong>, the Packard Center for <strong>ALS</strong> Research<br />

at Johns Hopkins University, and Microsoft Research. This work was also funded in part by the Intramural<br />

Research Program of the NIA and NINDS. Analysis and computing resources were provided by<br />

the Wake Forest School of Medicine Center for Public Health Genomics. For more information: Read our<br />

Upcoming Webinar<br />

Communication Between Caregivers and Those Diagnosed With <strong>ALS</strong><br />

<strong>The</strong> webinar will address how to avoid communication breakdowns, what to do when<br />

they happen, and psycho-social issues related to communication.<br />

November 19, <strong>2012</strong> (Monday) at 11:00 a.m. PT (2:00 p.m. ET)<br />

Speaker: Alisa Brownlee, ATP, <strong>The</strong> <strong>ALS</strong> <strong>Association</strong> <strong>Greater</strong> Philadelphia Chapter<br />

Call-in toll-free number (US/Canada):1-877-668-4490<br />

Session number: 827 014 887<br />

Session password: Atcall1 Click here to attend this webinar.<br />

6


Helpful Resources<br />

What You Should Know about Taking Medications in the Wee Hours<br />

By Barbara Bronson Gray, RN, MN<br />

took any medication at all during the night.<br />

Any time you get up in the middle of the night to take a medication, you’re<br />

at risk for making a mistake.<br />

It’s dark. You’re tired and probably not very alert. You probably avoid turning<br />

on a light, perhaps to keep from waking up “too much,” or out of consideration<br />

for the rest of the family. You might even be a little unsure of<br />

the time. Is it 12 midnight or 1:20 in the morning on your digital clock?<br />

It's also hard to read the tiny print on prescription labels in low light and<br />

without contacts or glasses. And, in the morning, you may forget that you<br />

If you're taking a liquid, such as cough medicine, you might be tempted to drink out of the cap or the<br />

bottle if you don't have a spoon nearby. All those factors raise your risk of taking the wrong medication.<br />

Here are some tips to make sure you’re taking medications safely at night:<br />

Make some rules for yourself and your family when it comes to taking medications at night: Lights<br />

on. Read the label carefully. Check the time. Leave the pill container out so you remember in the morning<br />

that you took something.<br />

If you regularly need a medication in the middle of the night, leave it out on the counter to reduce<br />

the chance that you'll grab something else instead.<br />

If you travel, make sure you carefully label each medication you bring so you don't accidentally take<br />

the wrong drug.<br />

If you take sleeping pills, know which are slow-acting and which are long-acting and label them<br />

clearly. Be certain you know the time cut-off after which you should be happy just counting sheep.<br />

Keep a liquid measurement tool or spoon with any liquid drugs, like cough syrup, so you can easily<br />

get the proper dosage and won't be tempted to estimate or drink out of the cap. If you're traveling, tape<br />

a plastic spoon to the medication container.<br />

Upcoming Webinar<br />

Low Tech and Easy Communication Tools for Use in <strong>ALS</strong><br />

<strong>October</strong> 22, <strong>2012</strong> (Monday) at 11:00 a.m. PT (2:00 p.m. ET)<br />

Call-in toll-free number (US/Canada): 1-877-668-4490<br />

Session number: 820-891-240<br />

Session password: Attopiccall1<br />

Click here to attend this webinar.<br />

7


Way’s to STOP <strong>ALS</strong> in its Tracks<br />

Our Chapter is dedicated to the people living with <strong>ALS</strong> and their families in our<br />

area. We know you are too. Although there are many ways to support the work<br />

we do, there is an incredibly quick and easy way to fight <strong>ALS</strong> every payday.<br />

By giving through payroll deductions, you are taking your partnership with us<br />

to the next level. You can contribute to <strong>The</strong> <strong>ALS</strong> <strong>Association</strong> through Community<br />

Health Charities (CHC), a federation of premier health organizations that have joined together to raise<br />

charitable contributions in the workplace. Your gift will not only fund our Chapter's care services programs,<br />

but also <strong>The</strong> <strong>Association</strong>'s global <strong>ALS</strong> research endeavors and public policy efforts.<br />

To find out how you can participate in the CHC workplace giving program, please visit our website. Your<br />

gift, no matter how large or small, will have a profound impact on people living with this disease.<br />

Flexible Giving - Making Your Mark with a Bequest—Including <strong>The</strong> <strong>ALS</strong> <strong>Association</strong><br />

in your will or living trust is one of the simplest ways to leave a<br />

lasting legacy. With a bequest, you continue to enjoy the use of your assets<br />

during your lifetime - there is no immediate cost to you.<br />

Charitable bequests are flexible: you can designate a certain dollar amount<br />

or a certain percentage of your estate; or even specify that anything left<br />

after your loved ones are provided for will go to help fight <strong>ALS</strong>. Whichever<br />

type of bequest you choose, your gift will be put to use helping to eradicate<br />

this devastating disease.<br />

An important point to remember about charitable bequests is that you remain<br />

in control of your assets throughout your lifetime. Circumstances can<br />

change and one of the reasons bequests are so popular is that you can modify your beneficiaries at any<br />

time.<br />

Stopping <strong>ALS</strong> in its tracks is a group effort.<br />

Only through the help of dedicated individuals<br />

and volunteers will <strong>ALS</strong> be eradicated from our<br />

planet. Please consider becoming part of our<br />

team and:<br />

<br />

<br />

<br />

<br />

<br />

<br />

Make a donation at www.alssac.org<br />

Host a third party event to raise<br />

awareness and funds.<br />

Attend one of the many events<br />

already planned.<br />

Ask friends and family to join you in<br />

your effort to end <strong>ALS</strong>.<br />

Consider making an in-kind contribution<br />

of services or products that will<br />

defray costs for the <strong>Association</strong>.<br />

Consider a planned gift/bequest.<br />

For more information visit<br />

www.alssac.org<br />

8


Information & Resources for Patients<br />

Americans with Disabilities Act, www.usdoj.gov<br />

<strong>The</strong> Joint Commissions on the Accreditation Healthcare<br />

Organizations<br />

www.jointcommission.org<br />

Paralyzed Veterans of America, www.pva.org or call<br />

Kevin Patton at (916) 364-6791<br />

Medicare, www.medicare.gov<br />

National <strong>Association</strong> of Area Agencies on Aging,<br />

www.n4a.org<br />

U.S. House of Representatives, www.house.gov<br />

U.S. Senate, www.senate.gov<br />

Legislation Status, thomas.loc.gov<br />

California Department of Veterans Affairs (CDVA), Tele: 800-<br />

952-5626 (toll free) Web: www.cdva.ca.gov<br />

Reno VA Medical Center, SCI Telehealth Clinic Tele: 775-786-<br />

7200< ext. 1378<br />

VA Northern California, Julie Moua, MSW, SCI/D Coordinator Tele: 916-843-9130<br />

Social Security Administration, Tele:800-772-1213 (toll free) Web:www.ssa.gov<br />

Free App for the IPAD, Developed by an <strong>ALS</strong> Patient. For more information please visit: www.verballyapp.com<br />

Forbes Norris Clinic, Appointment Line: 415-600-3604<br />

UCD Clinic Appointment Line: (916) 734-4795<br />

<strong>The</strong> <strong>ALS</strong> <strong>Association</strong>, <strong>Greater</strong> <strong>Sacramento</strong> Chapter (916) 979-9265<br />

Congressment Dan Lungren, http://lungren.house.gov/contact-us<br />

Congressmen Jerry McNerney, http://mcnerney.house.gov/<br />

Congresswoman Doris Matsui, http://www.matsui.house.gov/<br />

Information, Resources and<br />

Contacts for P<strong>ALS</strong> living with <strong>ALS</strong><br />

Premier Medical, Brian Hackett, bhackett@premiermed.org<br />

Get the 414 on <strong>ALS</strong> update:<br />

<strong>The</strong> California Tax Check-Off Campaign has successfully raised<br />

$124K for <strong>The</strong> <strong>ALS</strong>/Lou Gehrig’s Disease Research Fund since<br />

January of <strong>2012</strong>. 100% of these funds (less the states 10% administrative<br />

fees go directly to finding an effective treatment<br />

for <strong>ALS</strong>.<br />

In 2013 we will again launch the “Get the 414 on <strong>ALS</strong>” campaign.<br />

We must raise $250K by June in order to maintain our<br />

voluntary contribution status on subsequent year’s California<br />

tax forms.<br />

Help us spread the word to friends, family, colleagues, and<br />

most importantly your CPA or tax preparer. Ask them to help<br />

us find a cure for Lou Gehrig’s Disease and spread the word<br />

about the opportunity to give on line 414 in California!<br />

9


Special Special Thanks to our Top Teams!<br />

<strong>The</strong> Spectaculars raised over $15,000!!<br />

Thank you to<br />

all those that<br />

participated in<br />

the <strong>2012</strong> Walk<br />

to Defeat<br />

<strong>ALS</strong>!<br />

2nd Place—Way to go Team Taylor! $14,100 raised!<br />

First Place<br />

individual<br />

fundraising:<br />

Cathy Speck<br />

First Place<br />

team<br />

Fundraising:<br />

<strong>The</strong><br />

Spectaculars!<br />

Third place— Awesome job Wish for Nish! Your team raised $9,711<br />

to support patients, caregivers and a cure!<br />

10


Thank you to our DONORS<br />

A<br />

B<br />

C<br />

C<br />

F<br />

G<br />

A-1 Body Shop<br />

Eleanor Abbott<br />

Amy Abramson<br />

Lizabeth Abramson<br />

Jeffrey And Heidi Adamski<br />

Walter Adamson<br />

Dora Aguilar<br />

Ann Albano<br />

Elizabeth Albright<br />

Carol Alderdice<br />

Julie Alejandre<br />

Mary Allen<br />

Maria Amaral<br />

David C Anderson<br />

Lara Anderson<br />

Andy Gagnon<br />

Frank Aochi<br />

Irene Areias<br />

Jamil Arevalo<br />

Georgann Arone<br />

Margaret Aumann<br />

Adrienne Austin-Shapiro<br />

Megan Avery<br />

Peggy Bachman<br />

Susan Banducci<br />

Cheryl Barber<br />

Anna Bardy<br />

Shannon Barker<br />

David Barney<br />

Stephanie Barrales<br />

Deanna Barrett<br />

Emmet Barton<br />

Susan Bassein<br />

Jim Bates<br />

Gary Baum<br />

Brieanne R. Baumbach<br />

Bay Coast Bank<br />

Pollyana Beauregard<br />

Wendy Beckerman<br />

Randy Bekker<br />

Sue Belli<br />

Kathy Bennion<br />

Carolyn Bevins<br />

Manuel Bohorquez<br />

Lori Bonds<br />

Linda Boosembark<br />

Regina Boswell<br />

Lyndie Boulton<br />

Joelle Bradley<br />

Karen Brannon<br />

Thomas Brinkman<br />

Patty Brodehl<br />

John Brodemus<br />

Chad Brown<br />

Jennifer Brown<br />

Patricia Brown<br />

Rodney Brown<br />

Anthony Browne<br />

Kristen Brunson<br />

Kathy Bryer<br />

Matthew Brys<br />

Diane Buchan<br />

David Buchanan<br />

Jane Buerger<br />

Patricia Burns<br />

Sue Butler<br />

Gina Callegari<br />

Cc Cooper & Sons<br />

Geogia Calamantes<br />

Joan Callaway<br />

Dorothy Callison<br />

Noelle Calvert<br />

Kathi Campbell<br />

Cathy Cano<br />

Stephen Carboni<br />

Peter Carey<br />

Kenneth Carlson<br />

Anastasia Carney<br />

Spence M Carson<br />

Julie Cartwright<br />

Lion-Carlos Carvajal<br />

Andrea Cerda<br />

Tina Chacon<br />

Malissa Chaffee<br />

Sue Chan<br />

Herbert Chandler<br />

James Chapman<br />

Janet Chaykin<br />

Tracy Cheffer<br />

Lois Chess<br />

Sara Chrisman<br />

Karen Christensen<br />

Megan Christian<br />

Cuiab - It Christian Myers<br />

Pamela Circo<br />

Beverly Clairfield<br />

Judith Clark<br />

Laurie Clark<br />

Idelle & Daniel Claypool<br />

Jacqueline Clemens<br />

Barbara Clements<br />

Christi Cleveland<br />

Karen Cochran<br />

Kathleen Coleman<br />

Mark Coleman<br />

Debbie Collett<br />

Frank Collins<br />

Mary K Conwell<br />

Jeanine Cotton<br />

Andrea Cottrell<br />

Cheryl Cox<br />

11<br />

Jeanine Cotton<br />

Andrea Cottrell<br />

Cheryl Cox<br />

Deborah Cremieux<br />

Julie Cross<br />

Claire Crowson<br />

Lynn Crystal<br />

D<br />

Elizabeth Davidson<br />

Heather Davidson<br />

Bonnie Davis<br />

Joyce Davis<br />

Thomas Dayton<br />

Elaine And Brent Defehr<br />

Karen Demartini<br />

Ron Dematei<br />

John Denton<br />

Desinations Mobility<br />

Hollye Dexter<br />

Diamond D Engineering<br />

Carolyn Doggett<br />

Kelly Doscher<br />

Maureen Driscoll<br />

Danielle Dunphy<br />

Lily Duong<br />

Shirley Duong<br />

Pat & Linda Dwyer<br />

E<br />

Edwin Echeverria<br />

Kimberly Eichorn<br />

Nicole Elliott<br />

Paula Elliott<br />

Heather Emerson<br />

Sandra Emerson<br />

Karen Enghusen<br />

Deanna Enos<br />

Tami Esling<br />

Gail Feenstra<br />

David Fenolio<br />

David Ferencik<br />

Amy Ferris<br />

George Fesus<br />

Justin Finnerty<br />

Vickie Firch<br />

David Fisher<br />

Scott Fishman<br />

Gloria Fleming<br />

Robert Ford<br />

Fred Forrer<br />

Hugh Fowler<br />

Marion Franck<br />

Ashley Fraser<br />

Amy Friedkin<br />

Karin Friedland<br />

Joanna Friesner<br />

Kenneth Fudge<br />

Dana Fuller<br />

G<br />

Edith Garcal<br />

John Garcia<br />

Nancy Garton<br />

Jenni Garverick<br />

Susanne Gerich<br />

Christina Grottkau<br />

Natalie Gubb<br />

Dennis Guerrieri<br />

Vanessa Guillory<br />

Gretchen Gulmon<br />

Barbara Guth<br />

Rosa Gutierrez<br />

H<br />

Elizabeth Hassett<br />

Richard Hassman<br />

Jo Hatcher<br />

Jeramie Heffley<br />

Patricia Heise<br />

Amy Heisler<br />

Fran Herzog<br />

Ginger Hess<br />

Juanice Hess<br />

Robert Hester<br />

Nancy Grimes Hibbert<br />

Nancy Hiestand<br />

Aimee Hill<br />

Dave Hinshaw<br />

Robbie Hintz<br />

Eileen Hitchcock<br />

Raquel Hoag<br />

Jennifer Giannini Beth Hoffmann<br />

Joan Giannoni Hoffmann Automotive<br />

Maureen Gill Dick And Carol Holdstock<br />

Edward Gilligan Susan Holland<br />

Susan Gillmeister Doris Holm<br />

Klaus Glaubitz Carole Hom<br />

Gabel Gloria Debra Horney<br />

Dorothy Gloyd Dan Howard<br />

Roxanne Gould Bonnie Howell<br />

Diana Gouvea Kimberly Hughes<br />

Jan Graeber Lou Ann Hughes<br />

Robin Graziani Thomas Hughes<br />

Donald Green Richard Hullum<br />

Earl Green Gene Humphrey<br />

John Green Jacque Humphrey<br />

Vicki Gregory Brenda Hurst<br />

Monica Grogan Cyndi Hutton<br />

Andrew Grossman


Team Performance through September 31, <strong>2012</strong>!<br />

Team Name Team Captian Goal Total<br />

Team Taylor Tracy Misfeldt 1500 14100<br />

<strong>The</strong> Specktaculars Cathy Speck 13008 14047<br />

Walkers for Watkins Lela Bayley 2000 10000<br />

Wish for Nish Jill Cerruti 0 9711<br />

Howell's Hope Bonnie Howell 3000 8720<br />

Cross/Novo/Moreno<br />

Fans Cherie Felsch 7500 7854<br />

<strong>Greater</strong> <strong>Sacramento</strong><br />

Chapter Amy Sugimoto 1750 7729<br />

HalliganHOPE <strong>ALS</strong>tars Kandace Halligan 10000 4200<br />

Team Mayhew John Mayhew 0 3684<br />

Team Kyle Kasey Snyder 1750 3469<br />

JayWalkers Ann Graef 1750 2845<br />

Team Aparicio Marina Perez-Aparicio 2500 2597<br />

Joe's Team Linda Hays 1000 2387<br />

Jim's Gigantes Sue Belli 1000 2365<br />

Lois' Angels Paul Kawata 0 2300<br />

Walter Walkers Terry Walter 1000 2160<br />

Tamis Team William Clute 1750 1860<br />

For <strong>The</strong> Love of Pete Chad Brown 1750 1751<br />

Team Gass Alexandra Gass 1750 1750<br />

<strong>The</strong> Intimidators Cristina Ruckrigl 1000 1744<br />

Team Buchanan David Buchanan 2000 1595<br />

James "Tops" Morgan<br />

Team Judy Morgan 0 1455<br />

Susie's Angels Arlene Ann Sandoval 0 1445<br />

Kaiser<br />

Danielle Mcknight-<br />

Jossis 1250 1350<br />

Tammy's Warriors Tammy Brierly 200 1345<br />

Walking for Donna Jennifer Porter 1000 1300<br />

Les' Sharp Shooters Anna Bardy 0 1275<br />

Claire's Crusaders Autumn Sharp 2000 1270<br />

Strip Teasers Madelynn Mcclain 200 1175<br />

Walking for Walden Melissa Walden 2500 1170<br />

Hoofin! it for Harrison Gary Harrison 0 1120<br />

Bette's Boopers Nancy Carney 500 1100<br />

<strong>ALS</strong> Walk for Monte<br />

Blair Sandi Lane 1000 1070<br />

Premier for P<strong>ALS</strong> Brian Hackett 1750 1000<br />

Feral Boy Kelly Phelps 1750 955<br />

ARMY OF LEE'S SUP-<br />

PORTERS Dianne Jared 1750 895<br />

McCarty Tribe Rosalyn Mccarty 1750 890<br />

Bob's Treasure Hunters Carrie Schaefer 1750 825<br />

<strong>The</strong> Champions Heather Emerson 1000 710<br />

Team Herman Sena Minshew 1750 705<br />

Hoff's Hope Jason Hoff 1750 650<br />

12<br />

Team Name Team Captain Goal Total<br />

Tom's Team Julie Hintz 1000 590<br />

Phoenix from the Asches Wendy Phoenix 500 558<br />

Walking for P<strong>ALS</strong> Nancy Wakefield 1750 475<br />

Yolo Sunset Lions Club Lion-Carlos Carvajal 0 465<br />

Jennifer's Angels Cindy Hall 500 420<br />

Team Ike Chelsea Laatsch 1750 410<br />

Mitzi's Miracle Makers Brieanne R. Baumbach 2000 370<br />

Love you Gobbs Ashley Coleman 1750 355<br />

Avis's Avengers Kevin Williams 1750 335<br />

Reach for the Stars Christa Emmons 1750 320<br />

UC Davis <strong>ALS</strong> Clinic Bjorn Oskarsson 1000 300<br />

Ben's Tribe Marge Rushing 200 260<br />

Sac State Hoopers Ashley Cadotte 1750 250<br />

Making Strides Mary Odbert 1000 245<br />

Reckless Russ Shane Cochran 1750 235<br />

Team Houston Susan Houston 0 230<br />

Mark's Angels Marilyn Dray 1750 220<br />

La Familia Gutierrez Aleecia Gutierrez 1000 210<br />

Allie's Cats Allison Robideaux 1000 200<br />

Team Ubuntu Charles Mason 500 200<br />

Phi Delta <strong>The</strong>ta - California<br />

Epsilon Max Tipp 2000 115<br />

Ruby's Raiders Justin Bradshaw 1750 100<br />

Yolo Hospice Mary Odbert 800 95<br />

Defeat <strong>ALS</strong> Walter Kaweski 1750 50<br />

Earth It Up! Julie Brown 1750 50<br />

Mike's Militia Wanda Holmes 200 30<br />

Valley Yellow Pages/Patty's<br />

Pals Steven Spring 1750 25<br />

Benny's Angels Monica Garcia 1750 20<br />

Zuber's Volksmarch Renee Zuber 1750 20<br />

Amelia's Avengers Cindy Fuentes 1750 0<br />

Folsom Lake Toyota Care<br />

Team Kathy Prado 1750 0<br />

Murphy Jarrod Murphy 100 0<br />

Scal Squad Brandi Mcneil 1750 0<br />

TEAM CBD Jacquelyn Prat 1750 0<br />

Team Gordie Brandon Cota 1750 0<br />

Team Kathy Amy Crowther 1750 0<br />

Team Olga Germaine Ramos 0 0<br />

Team Schoultz Carrie Schoultz 0 0<br />

<strong>The</strong> Jemmings Family Darlene Jemmings 0 0<br />

Toscano Whitney Toscano 1750 0<br />

Team Grace Erin Sanchez 1750 0<br />

walkin' and rollin' warriors Sara Gertz 1750 0


Howell’s Hope! Thank you, Bonnie!! $8,720 raised!!!<br />

Our Title Sponsor:<br />

Thank you to our Walk to Defeat Corporate Partners:<br />

13<br />

Special Thanks:<br />

A-1 Automotive<br />

Buckhorn Grill


Thank you to our<br />

donors!<br />

I<br />

L<br />

M<br />

N<br />

P<br />

S<br />

S<br />

W-Z<br />

Linda Ikeda<br />

Julie Ingleman<br />

Leslie Ingleman<br />

Inline Diesel Repair.<br />

Yvonne Inouye<br />

Suzy Irvine<br />

Kelly Irwin<br />

Mary Isola<br />

J<br />

Kathy Jackson<br />

David Janis<br />

Kathleen Jared<br />

Joanne Jensen<br />

Suzan Jensen<br />

Gary Johnsen<br />

Carole Johnson<br />

Leonard Johnson<br />

Pete Johnson<br />

Sheila Johnson-<br />

Schedin<br />

Michelle Johnston<br />

Michele Jones<br />

K<br />

Summer Kalwani<br />

Teresa Kaneko<br />

Paul Kawata<br />

Tara Kawata<br />

Barbara Kelley<br />

Barbara Kelly<br />

Melanie Madden<br />

Kathleen Kelly<br />

Kelly Madruga-Moses<br />

Marguerita Kelly<br />

Rob Mai<br />

Katharine Kelly-Ballinger<br />

Deanne Manning<br />

Kathryn Keyes<br />

Jason Martin<br />

Mehrdad Kharrazi<br />

S Martin<br />

Thomas Kidwell<br />

Sheila Martin<br />

Kirkland & Ellis<br />

Edwin And Jean Janet Martin-Mccoey<br />

Klingelhofer<br />

Lily Martinez<br />

Louise Knop<br />

Melissa Martinez<br />

Paul Koehler<br />

Harry Mathis<br />

Clint Koglin<br />

Katherine Matista<br />

Michael Koltnow<br />

Kathleen Kruk<br />

Nadine Kubas<br />

Walter Kuhn<br />

Daniel Kwong<br />

Everett L<br />

Autumn Labbe-Renault<br />

Laura Lacy<br />

Elyssa Lakich<br />

Gara Lander<br />

Eileen Landis<br />

Sandi Lane<br />

Christina Lang<br />

Susan Larson<br />

Barbara Leary<br />

Margaret Leavitt<br />

Kim Leclaire<br />

Megan Ledbetter<br />

Hai Grace Lee<br />

Zale Leigh<br />

Debi Lenard<br />

Elizabeth Lewis<br />

Kevin Lewis<br />

Nancy Lewis<br />

Rosetta Li<br />

Soledad Limitone<br />

Audrey Ling<br />

Cecilia Long<br />

Amy Lopez-Buescher<br />

Laura Lozano<br />

April Lucchesi<br />

Sara Lustbader<br />

James Luthin<br />

M<br />

Michelle Mauldin<br />

Denise Maxwell<br />

John Mayhew<br />

John Mayhew Sr<br />

Cathy Mcalister<br />

Karen Mcarthur<br />

Nancy Mcbeen<br />

Samntha Mccarthy<br />

Rosalyn Mccarty<br />

Kelly Mcconnen<br />

Erin Mcdermand<br />

Barby Mcginnis<br />

Michael Mcgourty<br />

Laura Mchugh<br />

Gail Mckay<br />

Judi Mckeehan<br />

Danielle Mckenna<br />

Lori Mckillop<br />

Marian Mclean<br />

William & Kathleen<br />

Mcmillan<br />

Amy Mcnece<br />

Pam Mcquillen<br />

Eileen Mcvey<br />

Diane Medina<br />

Patricia Mendez<br />

Shawna Merkle<br />

Denise Meyers<br />

Linda Meyers<br />

Jacob Mickelson<br />

Lee Miller<br />

Mark & Vicky<br />

Minamyer<br />

Kathleen Miner<br />

John Minker<br />

Sena Minshew<br />

Misty Mirko<br />

Tracy Misfeldt<br />

Denise Mitchell<br />

Stacy Mitchell<br />

Nancy Miyashiro<br />

Jane Moergen<br />

Linda Montgomery<br />

Lisa Moore<br />

Keiso Morimoto<br />

Roxanne Morris<br />

Andrea Motta<br />

Joanne Moylanaube<br />

Linda Myler<br />

Tom Nann<br />

Andrew Naughton<br />

Janine Neely<br />

Cynthia Nelson<br />

Sheila Neroda<br />

Susan Nestadt<br />

Julia Nguyen<br />

Norma Nicholson<br />

Pamela Nieberg<br />

Dan Nishio<br />

Denyse Nishio<br />

Gary Nooteboom<br />

Eleanor Norris<br />

Albert & Mary<br />

Novo<br />

Amy Nunez<br />

Sandra Nunez<br />

O<br />

Tina Olson<br />

Martha Ortega<br />

Matthew Ortega<br />

An Oskarsson<br />

Owens Healthcare<br />

P<br />

Jonathan Palfreyman Maria Raposa<br />

Kathryn Palmieri<br />

Maria Juliet Pambid Ann Real<br />

Tracy Pan<br />

Ann Panek<br />

Rhonda Parker<br />

Devon Pastor-<br />

Guzman<br />

Deborah Paulsen<br />

Timothy Peart<br />

Beth Pecenka<br />

Mark Pena<br />

Julie Pendergast<br />

Ken Pereira<br />

Gladis Perez<br />

Julio Perez<br />

Marina Perez-<br />

Aparicio<br />

Geoff Perugino<br />

Kari Peterson<br />

Frances Petrocelli<br />

Wendy Petties<br />

Lindsey Phelps<br />

Susan Phillip<br />

Patti Phillips<br />

Steven Phillips<br />

Wendy Phillips<br />

Janet Pierson<br />

Margaret Pimentel<br />

Linda Pinkham<br />

Ellen Pontac<br />

Jennifer Porter<br />

Penny Poteet<br />

Diana Potts<br />

Marjorie Powell<br />

Tamra Preston<br />

Lori Purvis<br />

Q<br />

Jacqueline Quantz<br />

James Quilty<br />

R<br />

Maria Ramirez<br />

Susan Rasmussen<br />

Rita Redcloud<br />

Marcia Reemts<br />

Gloria Regan<br />

Jean Reinking<br />

Sharon Rich<br />

Carmella Richardson<br />

Jane Richardson<br />

Betty Richter<br />

Jacklynne Riley<br />

Barbara Rioux<br />

Melissa Riqueros<br />

Oscar Rivas<br />

David/Marci Rogers<br />

Shirley Rosenberg<br />

Rebecca Rowan<br />

14<br />

Pamela Russell-Hodgson<br />

Diane Wershing<br />

Sheibley<br />

Jean Sadler<br />

Calvin Saephan<br />

Catherine Sale<br />

Edgar And Cordelia<br />

Sander<br />

Joan Sanders<br />

Arlene Ann Sandoval<br />

Joe Sannasardo<br />

Michelle Sattel<br />

Vanessa Savage<br />

Debbie Scalero<br />

Stephanie Schroeer<br />

Joseph Schwartzbine<br />

Anthony Sertich<br />

Autumn Sharp<br />

Shauna Sharples<br />

Carl Sheardown<br />

Julie Sheldon<br />

Jim Shepherd<br />

Kuldip Shergill<br />

Michelle Silvestry<br />

Shana Simon<br />

Elizabeth Sinclair Jaffe<br />

Donald Sizemore<br />

Leland Sizemore<br />

Elizaberth Smith<br />

George Smith<br />

Jill Smith<br />

Leona Smith<br />

Peggy Smith<br />

Douglas Smoot<br />

Kasey Snyder<br />

Larry Snyder<br />

Annette Soars<br />

Curtis Solberg<br />

David Solberg<br />

James Solberg<br />

Diana Somers<br />

William Soper<br />

Diane Sparks<br />

Cathy Speck<br />

Diane Steele<br />

Kimberly Steinmann<br />

Janet Sterling<br />

Mary & Jeanie Stevenson<br />

Tami Stewart<br />

Susie Stocking<br />

Brenda Sulzmann<br />

Pam Surface<br />

Geraldine Suskin<br />

Gail Sutton<br />

T<br />

Beatriz Talamantes<br />

Elaine Talley<br />

Wilson Talley<br />

Shoko Tanaka<br />

Glenn Taniguchi<br />

Vilisi Tataka<br />

Cathy Templeman<br />

Janice Thomas<br />

Mary Thompson<br />

Robert Thompson<br />

Teresa Thurston<br />

Jolanne Tierney<br />

Sally Tietz<br />

Nancy Tilman<br />

Michelle Toccoli<br />

Carl Toft<br />

Tracy Tomasky<br />

Susan Towne<br />

Rebecca Townsend<br />

My Tran<br />

Jeanmarie Trapp<br />

Lam Truong<br />

Elizabeth Tryon<br />

Paul Tsushima<br />

Dee Turrin<br />

U-V<br />

Ercu Ucan<br />

Douglas Under-<br />

Robert Vallone<br />

Jennifer Van Vliet<br />

Peter Voelker<br />

Tamara Vollmer<br />

Todd Voth<br />

Janet Vyvlecka<br />

Ruth Waddington<br />

Jerome Wade<br />

Shannon Walsh<br />

Doug Walter<br />

Terry Walter<br />

Lori Wasson<br />

Dodie Weiner<br />

Betty Weisser<br />

Gail Weller<br />

Melinda Welsh<br />

Jennifer Williams<br />

Kevin Williams<br />

Margaret Williams<br />

Stephanie Williams<br />

Candace Wilson<br />

William Wilson<br />

Laurie Winthers<br />

Bill Womeldorf<br />

Women Of <strong>The</strong> Moose<br />

Jonathan Woodcock<br />

Pattie Woodfill<br />

Susan Wren<br />

Nancy Yamada<br />

Ronald Yamada<br />

Stephanie Yoder<br />

Cristina Young<br />

Debbie Yung<br />

Les Zieve<br />

Karen Zimmerman

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