Annual Report 2010- 2011 - National Down Syndrome Society

Annual Report
2010- 2011
TABLE OF CONTENTS
 ABOUT NDSS
 ABOUT DOWN SYNDROME
 LETTER FROM PRESIDENT AND
BOARD CHAIR
 HIGHLIGHTS 2010 – 2011
 FINANCIALS
 ORGANIZATIONAL INFORMATION
 AFFILIATE LIST
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The mission of National Down Syndrome Society is to be the
national advocate for the value, acceptance and inclusion of
people with Down Syndrome.
ABOUT NDSS
The National Down Syndrome Society (NDSS)
has worked since 1979 to benefit people
with Down syndrome and their families
through national leadership in education,
research, and advocacy. NDSS was founded
by Elizabeth Goodwin, following the birth of
NDSS in order to address the pressing
needs of families.
From such humble beginnings, NDSS
gradually expanded to become one of the
largest organizations in America focusing
on intellectual disabilities and offers the
following:
her daughter Carson, who has Down
syndrome. After Carson’s birth, Mrs.
Goodwin and her husband soon discovered
that support and resources available to
parents of a child with Down syndrome were
very limited. Elizabeth subsequently set up
•
NDSS Community Support Programs
•
NDSS National Policy Center
•
NDSS Public Awareness Initiatives
•
National Buddy Walk® Program
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The National
Down Syndrome
Society envisions a
world in which all
people with Down
syndrome have
the opportunity to
enhance their
quality of life,
realize their life
aspirations, and
become valued
members of
welcoming
communities.
NDSS Community Support Programs
NDSS leads a network of over 350 affiliate groups across the country,
consisting of local parent support groups and other organizations that provide
services to the Down syndrome community.
Some key services NDSS offers to its affiliates and to the Down syndrome
community as a whole include:
The Goodwin Family Information and Referral Center
Through its toll-free helpline and e-mail service, NDSS receives more than
10,000 requests a year for information on Down syndrome. The Goodwin
Family Information and Referral Center is also supported by a translation
service that can be accessed in over 150 languages.
Publications
NDSS publishes new and expectant parent guides and informational brochures
in both English and Spanish.
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Website
news stories.
A comprehensive and up-to-date resource for
families, professionals, affiliates and others,
NDSS monitors all forms of media on a daily
www.ndss.org receives over 3 million page views
basis, 365 days a year, and responds to any
each year and includes extensive Spanish
inappropriate comments in an ongoing effort to
translation.
educate and to promote accurate and positive
messaging about Down syndrome.
NDSS National Policy Center
The NDSS National Policy Center strives to protect
The My Great Story public awareness campaign
the rights and remove barriers for all individuals
seeks to ignite a new way of thinking about
with Down syndrome. The work of the policy
people with Down syndrome by sharing and
center is guided by its dynamic legislative agenda,
telling stories, which are displayed in a beautiful
which includes a wide range of issues and touches
online storybook on the NDSS website. The
every stage of life. These issues include education,
stories are written by people with Down
health care, research, employment and
syndrome, their family members, friends, co-
independent living.
workers, teachers and others. Public service
announcements for the campaign in both print
The NDSS National Policy Center:
and digital forms have been featured in national
• Works with Congress and federal agencies to
and local media outlets across the country.
develop and improve legislation
• Trains and educates parents, self-advocates and
To view the campaign and share your story, or to
others to advocate on the local, state and national
vote and comment on stories already in the
levels
collection, visit www.ndss.org/stories.
• Organizes and participates in coalitions of
national disability organizations
National Buddy Walk® Program
• Leads national and statewide Governmental
The Buddy Walk® is a national Walk program
Affairs Committees
created by NDSS to promote acceptance and
inclusion of people with Down syndrome and to
Public Awareness Initiatives
raise funds for local and national initiatives that
The purpose of public awareness at NDSS is to turn
support people with Down syndrome and their
the mission of “value, acceptance and inclusion”
families. The Buddy Walk began in 1995 as a
into a comprehensive national public awareness
public awareness and advocacy effort with 17
message. NDSS proactively reaches out to national
Walks. A fund raising component was added in
media outlets, including television, print, radio,
1999. Today there are 275 registered walks with
online and social media, to secure editorial
over 250,000 Walkers, which raise approximately
content on issues within the Down syndrome
$10 million annually across the country.
community, as well as positive and inspirational
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ABOUT DOWN SYNDROME
Down syndrome is a genetic condition that occurs
FACT:
in one in every 691 births. It is the most frequently
Down syndrome
occurs in people of
all races and
economic levels.
occurring chromosomal condition and is found in
people of all races and economic levels. More than
400,000 people in the United States have Down
syndrome.
A few of the common physical traits of Down
syndrome are low muscle tone, small stature, an
upward slant to the eyes, and a single deep crease
across the center of the palm. Every person with
Down syndrome is a unique individual and may
possess these characteristics to different degrees
or not at all.
Quality educational programs, a stimulating home
environment, good health care, and positive
People with Down syndrome have an increased risk
support from family, friends and the community
for certain medical conditions such as congenital
enable people with Down syndrome to develop
heart defects, respiratory and hearing problems,
their full potential and lead fulfilling lives.
Alzheimer's disease, childhood leukemia, and
thyroid conditions. However, many of these
People with Down syndrome attend school and
conditions are now treatable, so most people with
work, and participate in decisions that concern
Down syndrome lead healthy lives. Life
them, and contribute to society in many wonderful
expectancy for people with Down syndrome has
ways.
increased dramatically in recent decades - from 25
in 1983 to 60 today.
Researchers are making great strides in identifying
the genes on Chromosome 21 that cause the
People with Down syndrome experience cognitive
characteristics of Down syndrome. Many feel
delays, but the effect is usually mild to moderate
strongly that it will be possible to improve, correct
and is not indicative of the many strengths and
or prevent many of the problems associated with
talents that each individual possesses. Children
Down syndrome in the future.
with Down syndrome learn to sit, walk, talk, play,
and do most other activities; only somewhat later
than their peers without Down syndrome.
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Dear Friends,
In 2010-2011, NDSS continued to be the premier national advocate for the value, acceptance,
and inclusion of people with Down syndrome.
Our award winning My Great Story public awareness campaign continued to ignite a new way
of thinking about people with Down syndrome by sharing their stories and those of their family
members, friends, co-workers, teachers and others. Public service announcements for the
campaign in both print and digital forms have been featured in national and local media
outlets across the country and around the world. This year the campaign was recognized in Ad
Age and received top honorary mention by PR News for the best social awareness campaign.
My Great Story has been featured in Newsweek, Time, Vogue, USA Today, Fortune and many
other premier media outlets reaching an audience of over 250 million people worldwide.
In February of 2010, NDSS held its second annual Buddy Walk on Washington® conference,
which brought together over 200 advocates for people with Down syndrome and their families,
including many self-advocates. The gathering succeeded in sending a strong message to
elected officials about the many important national policy initiatives that the NDSS National
Policy Center tirelessly fights for on a daily basis. Many meetings were held with members of
Congress and key staffers and produced new sponsors for critical legislation. Moreover, a
Congressional Down Syndrome Caucus Briefing organized by Congresswoman Cathy McMorris
Rodgers, which included remarks by Congressman Pete Sessions and Congressman Chris Van
Hollen, was widely appreciated and praised by participants.
NDSS continued to handle over 10,000 annual requests for information on Down syndrome via
its Goodwin Family Information and Referral Center, which offers the public a toll-free
helpline, email service, and even a translation service that can be accessed by over 150
languages. The official NDSS website, www.ndss.org continued to be the most comprehensive
and up-to-date resource for families, professionals, affiliates and others. This year the site
received nearly 3 million page views!
The National Buddy Walk® Conference was held in sunny Jacksonsville, Florida and more
successful than ever. It brought together close to 100 participants from over 40 Affiliate
groups across the country. The NDSS Buddy Walk program continued to be the Down syndrome
community's largest public awareness event and fundraiser, once again hundreds of walks
were held, many thousands participated, and millions were raised. Once again NDSS partnered
with the Regal Entertainment Group in a National Buddy Walk® program awareness effort with
a public service announcement that aired in all Regal theatres throughout the U.S.
and featured NDSS celebrity ambassadors, Meredith Veira, Chris Burke, Nancy O'Dell, John C.
McGinley, and Albert Pujols.
We look forward to another year of continued success.
Jon Colman, President
Charles H. Gerhardt, III, Chairperson
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HIGHLIGHTS 2010 - 2011
NDSS COMMUNITY SUPPORT PROGRAMS
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•
NDSS hosted very successful monthly webinar series. Webinars covered the Buddy
Walk and Public Awareness with guest speakers including the author of "I'm Down With
You," Respiratory Issues with Dr. Paul Moore, Mentoring with Camp PALS, and more.
Thanks to a grant from the Mary Duke Biddle Foundation, translated its popular About
Down Syndrome Brochure into Spanish and printed for distribution.
6 students with Down syndrome were awarded postsecondary education grants
through the Joshua O’Neill and Zeshan Tabani Enrichment Fund.
NDSS NATIONAL POLICY CENTER
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•
•
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•
The 2011 Buddy Walk on Washington® , held on February 7th and 8th, was a
remarkable success. Close to 200 affiliate leaders, parents and self-advocates
attended the event from 31 states. Many meetings were held with members of
Congress and key staffers and produced new sponsors for legislation whose
passage NDSS continues to pursue.
Work continues to refine key pieces of legislation so they can be re-introduced as
soon as possible in the new Congress. After several meetings with key Hill staffers
and staff at NIH, the Trisomy 21 Translational Research Parity Act, is being
prepared for the re-introduction by the end of June 2011.
Similarly, the Achieving a Better Life Experience (ABLE) savings bill is also being
prepared for re-introduction at the beginning of June.
In light of the tight economic picture in Congress, many federal programs are
being cut or eliminated. NDSS organized an advocacy effort in collaboration with
other national organizations to retain funding in the 2011 appropriations for the
higher education model demonstration programs for students with intellectual
disabilities.
NDSS spearheaded a National Survey Project, which examined whether the rights
of parents and children with disabilities in special education are protected.
NDSS PUBLIC AWARENESS INITIATIVES
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•
The My Great Story campaign reached a donated ad space total of $6,500,000,
reaching an audience of 295,000,000 in 47 states and 10 countries.
To further expand the My Great Story campaign and engage our readers, NDSS
created the My Great Story of the Month Contest. Corporate sponsors of the
contest secured were: Swatch Group: Flik Flak Brand, Shoebuy.com, Verizon
Wireless, Coffee Bean, Jamba Juice, and Shaeffer Fine Pens.
NATIONAL BUDDY WALK® PROGRAM
•
Over 275 Buddy Walk events were held in 2010-2011, with more than 290,000
individuals participating, and over $11,550,000 raised.
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Statements of Financial Position
March 31, 2011 and 2010
2011
2010
$448,632
45,046
3,325,149
4,838
102,359
393,579
$456,574
55,210
2,028,030
1,814
87,381
401,105
$4,319,603
$3,030,114
$218,904
24,695
$173,536
16,153
243,599
189,689
Net Assets
Unrestricted
Temporarily restricted
Permanently restricted
2,748,136
257,052
1,070,816
2,545,321
274,288
20,816
Total net assets
4,076,004
2,840,425
$4,319,603
$3,030,114
Assets
Cash and cash equivalents
Contributions receivable, net
Investments, at fair value
Accrued interest receivable
Prepaid expenses and other assets
Property and equipment, net
Total assets
Liabilities and Net Assets
Liabilities
Accounts payable and accrued expenses
Other liabilities
Total liabilities
Commitments
Total liabilities and net assets
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Statements of Activities
Year Ended March 31, 2011 (With Summarized Comparative Information for 2010)
Unrestricted
Revenue and Other Support
Contributions
National Buddy Walk
In-kind contributions
Special events
$778,199
Less direct benefit costs
(305,162)
Rental income
69,722
Less related occupancy
expenses
(14,401)
Booklets, films and educational materials
Conference income
Program revenue
Miscellaneous income
Net assets released from restrictions
Total revenues and other support
55,321
7,639
5,925
1,285
637,548
2,231,428
Expenses
Program services
Public policy
Public awareness
Buddy Walks
Community relations
Research
Total program services
Support services
Management and general
Fund raising
Total supporting services
Total expenses
Change in net assets before investment income
Investment income
Change in net assets
Net assets, beginning of year
Net assets, end of year
$969,597
Temporarily
Restricted
Permanently
Restricted
$93,587
479,331
$1,050,000
Total
2011
2010
$2,113,184
479,331
111,664
$778,854
462,665
123,896
30,588
473,037
577,902
66,136
10,614
7,650
2,000
3,737
(637,548)
(34,042)
55,321
7,639
5,925
1,285
3,247,386
2,033,454
509,067
264,173
432,339
476,774
1,682,353
509,067
264,173
432,339
476,774
1,682,353
389,729
292,161
401,341
397,370
54,221
1,534,822
262,956
294,859
557,815
262,956
294,859
557,815
225,487
232,307
457,794
2,240,168
2,240,168
1,992,616
40,838
401,375
442,213
111,664
442,449
1,050,000
(8,740)
211,555
202,815
(34,042)
16,806
(17,236)
1,050,000
1,050,000
1,007,218
228,361
1,235,579
2,545,321
274,288
20,816
2,840,425
2,398,212
$2,748,136
$257,052
$1,070,816
$4,076,004
$2,840,425
This information has been excerpted from our March 31, 2011 financial statements audited by our independent accountants
WeiserMazars LLP. For a complete copy of our Audited Financial Statements for 2011, visit www.ndss.org or write to: National
Down Syndrome Society, 666 Broadway, New York, NY 10012.
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ORGANIZATIONAL INFORMATION
BOARD OF DIRECTORS
President
Jon Colman
Board of Directors
Elizabeth F. Goodwin, Founder
Charles H. Gerhardt, III, Chairperson
CAPT Robert P. Taishoff USN (ret), Vice
Chairperson
Terrence P. Clancy, Treasurer, Finance &
Audit
Brian Skotko, M.D., M.P.P., Secretary,
Governance
Robert F. Cioffi, Public Awareness
Christopher J. Gedney, Development
Stephen Beck, Jr., Buddy Walk
John David Hoppe, Government Affairs
Committee
Tiffany Barfield
Douglas Biklen
Louise I. Borke
Thomas Hehir
Jim Nussle
Stephanie L. Sherman
Jo Ann Simons, MSW
Erin Thompson
Sara C. Wolff
Affiliate Advisory Board
Steve Beck
Jennifer Bonawitz
Doris Erhart
Janet Gora
Maureen Gallagher
Anita Ford
Heather Sachs
Stephen Simpson
Heather Trammell
Gail Williamson
Self-Advocate Advisory Board
Chris Burke
Mitchell Levitz
Essie Pederson
Phil Pedlikin
Mia Peterson
Erin Thompson
Sara C. Wolff
Clinical Advisory Board
Brian Skotko, M.D., M.P.P., Chairperson
George T. Capone, M.D.
Jessica DeBord, D.D.S.
Jose C. Florez, M.D., Ph.D.
Priya Kishnani, M.D.
Len Leshin, M.D.
Philip Mattheis, M.D.
Joan Guthrie Medlen, R.D.
Paul Moore, M.D.
William Motley, M.D., M.S.
Bonnie Patterson, M.D.
Romney L. Snyder-Croft, LCSW, ACSW
Karen Summar, M.D., M.S.
Leslie Walker-Hirsch, M.Ed., FAAIDD
Patricia C. Winders, P.T.
Science Advisory Board
Ira T. Lott, M.D., Chairperson
George Capone, M.D.
Terry Hassold, Ph.D.
Julie R. Korenberg, Ph.D., M.D.
William C. Mobley, M.D., Ph.D.
Lynn Nadel, Ph.D.
David Patterson, Ph.D.
Roger H. Reeves, Ph.D.
Nancy J. Roizen, M.D.
Stephanie L. Sherman, Ph.D.
Education Advisory Board
Mark Alter
Douglas Biklen
Joyce Clark
Sandi Cole
Patricia Guard
Susan Brody Hasazi
Thomas Hehir
David Mank
Michael L. Remus
David Rose
Ed Sontag
Martha L. Thurlow
Honorary Board of Governors
Thomas J. O'Neill, Chairperson
Emily Perl Kingsley
Arden G. Moulton
Siegfried M. Pueschel, M.D., Ph.D., J.D.,
M.P.H.
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ORGANIZATIONAL INFORMATION
STAFF LIST (in alphabetical order)
Madeline Alemar, Development Associate
Patricia Baker, Program Manager
Chris Burke, Goodwill Ambassador/Administrative Assistant
Julie Cevallos, Vice President of Marketing
Jon Colman, President
Beth Julia Finkelstein, Executive Vice President
Harry Jellinek, Director of Finance
Stephanie Smith Lee, Senior Policy Advisor
Vanessa Quick, Manager of Education and Programs
Ricki Sabia, Associate Director, National Policy Center
Pamela Sandonato, Vice President of Development
Sarah Schleider, Consultant
Carol Smith, Executive Assistant/Finance Assistant
Jordana Stern, Communications Associate
Rebecca Switalski, National Buddy Walk® Director
Sara Weir, Vice President of Advocacy and Affiliate Relations
Madeleine Will, Director, National Policy Center
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AFFILIATE LIST (in alphabetical state)
Affiliate Alaska Chapter of the National Down Syndrome Congress State Affiliate State Down Syndrome Connection of the Bay Area CA Down Syndrome Foundation of Orange County CA Down Syndrome Information Alliance CA DS Action CA Exceptional Parents Unlimited CA Little Impressions Playgroup (Age 0 -­‐ 12 years) CA National Down Syndrome Coalition CA Sonoma County Down Syndrome Support Group CA Special Parents Information Network (SPIN) CA Uno Mas! CA Ups and Down Syndrome Support Group CA Colorado Springs Down Syndrome Association CO Mile High Down Syndrome Association CO The Phyllis Phund CO 21 Strong CT Connecticut Down Syndrome Congress CT Lighthouse Voc-­‐Ed Center CT Down Syndrome Association of Delaware DE Acton Up With Downs FL Broward Gold Coast Down Syndrome Organization FL Buddy Cruise, Inc. FL Down Syndrome Association of Central Florida FL Down Syndrome Association of Jacksonville FL Down Syndrome Association of Miami FL Down Syndrome Association of Northwest Florida FL Down Syndrome Association of Tallahassee FL Down Syndrome Foundation of Florida FL AK Down Syndrome Society of Interior Alaska AK BUDS (Bringing Up Down Syndrome) AL Down Syndrome Society of Baldwin County AL Down Syndrome Society of Mobile County AL FRIENDS AL Montgomery Area Down Syndrome Outreach Group AL North Alabama Down Syndrome Society AL Parent Advocates Down Syndrome AL 4-­‐States Down Syndrome Society AR Down Syndrome Association of Northeast Arkansas AR Down Syndrome Connection of Northwest Arkansas AR Down Syndrome Network AZ Leti Foundation AZ Santa Cruz Parent Love Connection AZ Sharing Down Syndrome Arizona AZ Southern Arizona Network for Down Syndrome AZ Brighterside of Down Syndrome of San Joaquin County CA BUDS of the Redwoods CA Central Coast Down Syndrome Association CA Club 21 Learning and Resource Center CA Down Syndrome Association of Central California CA Down Syndrome Association of Hemet CA Down Syndrome Association of Los Angeles CA Down Syndrome Association of Orange County CA Down Syndrome Association of Riverside County West CA Down Syndrome Association of San Diego CA 13
AFFILIATE LIST (in alphabetical state)
Affiliate State Affiliate State Southeast Idaho Down Syndrome Support Group ID Treasure Valley Down Syndrome Association ID BUDS (Bringing Up Down Syndrome) IL Celebrate Differences IL Central Illinois Down Syndrome Organization IL Champaign County Down Syndrome Network IL Down Syndrome Family Connection IL DS Support IL Family Ideas Network for Down Syndrome IL Frankie's Fund IL GiGi's Playhouse IL Heart of Illinois Down Syndrome Association IL Kankakee Area Down Syndrome Society IL Lincoln Land Down Syndrome Society IL Livingston Area Down Syndrome Society IL National Association for Down Syndrome IL Riverbend Down Syndrome Association IL UPS for DOWNs IL Columbus Area Down Syndrome Support Group IN Down Syndrome Association of Northeast Indiana IN Down Syndrome Association of Northwest Indiana Down Syndrome Family Support and Advocacy Group (Michiana Down Syndrome) IN Down Syndrome Indiana Down Syndrome Support Association of Southern Indiana IN Elkhart County Down Syndrome Support Group IN Hamilton County Down Syndrome Parent Group IN Smile on Down Syndrome IN Down Syndrome Network of Pinellas FL Down Syndrome Supported Living FL Florida Keys Down Syndrome Educational Trust FL FRIENDS Support FL Fun Coast Down Syndrome Association FL Gold Coast Down Syndrome Organization FL Manasota BUDS (Bringing Up Down Syndrome) FL Northcentral Florida Playgroup FL Reaching Down's of Northwest Florida FL Southwest Florida PODS Angels Family Support Group FL Treasure Coast Down Syndrome Awareness Group FL Up with Downs of Hernando County FL Upside 2 Downs of Pensacola FL Chattahoochee Valley Down Syndrome Support Group GA Down Syndrome Association of Atlanta GA Down Syndrome Association of South Georgia GA Lowcountry Down Syndrome Society GA National Down Syndrome Congress GA Hawaii Down Syndrome Congress HI Maui Down Syndrome Family Support Group HI Designer Genes Down Syndrome Group IA Hawkeye Area Down Syndrome Association IA IN Northwest Iowa Down Syndrome Society IA Tri-­‐State Down Syndrome Network IA IN Up with Down IA Upside of Down Syndrome Family Group IA DS Connections ID 14
AFFILIATE LIST (in alphabetical state)
Affiliate State Down Syndrome Guild of Greater Kansas City KS Affiliate Parents of Children with Down Syndrome (PODS) of Prince George's County State Maine Down Syndrome Network ME Capital Area Down Syndrome Association MI Central Michigan Down Syndrome Society MI Down Syndrome Association of West Michigan MI Down Syndrome Guild of Southeast Michigan MI Down Syndrome Support Team MI Families Exploring Down Syndrome MI FRIENDS Special Parents Initiative for Down Syndrome Education and Resources (SPIDER) MI St. Clair County Down Syndrome Support Group MI Angels Up North Down Syndrome Group MN Down Syndrome Association of Minnesota Albert Pujols Wellness Center for Adults with Down Syndrome MN Down Syndrome Association of Greater St. Louis MO Down Syndrome Group of the Ozarks MO Heartland Down Syndrome Association MO Central Mississippi Down Syndrome Society MS Gulf Coast Down Syndrome Society MS Northeast Mississippi Down Syndrome Society MS Down Syndrome Connection of Missoula, Montana DREAM (Down Syndrome Research, Education and Advocacy of Montana) MT Family Outreach (Region IV) MT MD Down Syndrome Society of Wichita KS Southeast Kansas Down Syndrome Society KS Down Syndrome Association of Central Kentucky KY Down Syndrome of Louisville KY Down Syndrome of South Central Kentucky KY Green River Area Down Syndrome Association KY Stewart Home School KY Ups-­‐n-­‐Downs of Western Kentucky Blessed By Downs Support Group of Northeast Louisiana (Monroe and Surrounding Areas) Blessed By Downs Support Group of Southeast Louisiana (Lafourche, Terrebonne, Assumption and Surrounding Areas) KY LA MI LA Cenla Down Syndrome Association LA Down Syndrome Association of Acadiana LA Down Syndrome Association of Greater New Orleans LA MO Down Syndrome Awareness Group of Baton Rouge LA Up with Downs LA Up4Downs of SWLA Inc. Bridging the Gap Family Support Group for the South Shore and Cape Cod Down Syndrome Resource Group of Western Massachusetts LA MA MA Massachusetts Down Syndrome Congress MA Morning Travelers 2 (Dual Diagnosis Group) MA Support, Educate, Motivate, Advocate (SEMA) MA MT THREADS MA Angels Forever Up MD Yellowstone County's "Extra" Special Kids (YES Kids) MT Chesapeake Down Syndrome Parent's Group MD Angels of Dare NC Down Syndrome Association of Charlotte NC Down Syndrome Network of Greater Greensboro NC Down Syndrome Network of Montgomery County FRIENDS (Family Resource, Information & Education Network for Down Syndrome) MD MD 15
AFFILIATE LIST (in alphabetical state)
Affiliate State Affiliate State Down Syndrome Network of Northern Nevada NV Down Syndrome Organization of Southern Nevada NV Pahrump Disability Outreach Program NV Alexander's Angels NY Association for Children with Down Syndrome NY Bronx and Manhattan Parents of Down Syndrome NY Chautauqua Daisy (Down Syndrome Youth) Group NY Down Syndrome Advocacy Foundation NY Down Syndrome Aim High Resource Center NY Down Syndrome Association of Central New York NY Down Syndrome Association of St. Lawrence County NY Down Syndrome Association of the Hudson Valley NY Down Syndrome Association of Westchester NY Down Syndrome Connection of Long Island Down Syndrome Information Network of the Twin Tiers NY Down Syndrome Parent Group of Western New York Down Syndrome Parent Support Group of Genesee County Down Syndrome Support Group of Tompkins-­‐
Cortland Area Family and Friends Down Syndrome Association of Niagara NY Flower City Down Syndrome Network NY Franklin County Down Syndrome Society NY Kennedy-­‐Willis Center on Down Syndrome NY Manhattan Down Syndrome Society Mohawk Valley Down Syndrome Support and Awareness Group NY New York City Down Syndrome Parent Group NY North Country Down Syndrome Associates, Inc. Southern Tier Down Syndrome Information Network NY Down Syndrome Support Group of Rowan County NC Network of Down Syndrome Supporters NC Piedmont Down Syndrome Support Network NC Tri County Down Syndrome Group NC Triangle Down Syndrome Network NC Western North Carolina Down Syndrome Alliance NC Designer Genes of North Dakota ND Up With Downs ND Down Syndrome Alliance of the Midlands NE Down Syndrome Association for Families of Nebraska NE Northern New England Down Syndrome Congress NH 21 Down NJ Anna Foundation for Inclusive Education NJ Billy's Buddies NJ Buddy Walk® of South Plainfield NJ NY BUDS (Bringing Up Down Syndrome) Central New Jersey Down Syndrome Parent Advocacy Group NJ NJ Down Syndrome Association of Central New Jersey NJ Down Syndrome Congress of Northern New Jersey NJ NY NY NY Down Syndrome Group of Northwest New Jersey NJ Family Resource Associates KIIDS (Knowledge and Information About Individuals with Down Syndrome) NJ NJ Network 21 NJ Our Little Hero C.O.P. Organization NJ NY Roxbury Parents For Exceptional Children Down Syndrome Association of Southeastern New Mexico NJ NM Rio Grande Down Syndrome Network NM NY 16
AFFILIATE LIST (in alphabetical state)
Affiliate State Affiliate State Down Syndrome Interest Group of Delaware County Down Syndrome Interest Group of Montgomery County PA Down Syndrome Research Online Advocacy Group PA Down Syndrome Society of Central Pennsylvania PA Down Syndrome Support Group of Lancaster County PA Eastern Pennsylvania Down Syndrome Center PA Friends and Family of Down Syndrome PA Friends of Trisomy 21 Center PA Hopes and Dreams Foundation PA Luzerne County Down Syndrome Network Parents of Down Syndrome of Northeastern Pennsylvania PA Pocono Parents of Down Syndrome (PPODS) PA T21 Club of the Delaware Valley PA Ups & Downs & All Around PA York Area Down Syndrome Association PA Asociación Síndrome Down PR Fundación Puertorriqueña Síndrome Down Madres Innovadoras de Personas con Síndrome de Down PR Mis Amigos de Síndrome de Down PR Down Syndrome Society of Rhode Island RI Down Syndrome Association of the Lowcountry SC Down Syndrome Family Alliance of Greenville SC Family Connection of South Carolina SC Up With Downs SC New Directions ∙ Down Syndrome Association SD Ups of Downs Family Support Group SD Chattanooga Down Syndrome Society TN Trisomy 21 Foundation of Northern New York NY Westchester Arc Parent Assistance Committee on Down Syndrome NY PA Down Syndrome Association of Central Ohio OH Down Syndrome Association of Greater Cincinnati OH Down Syndrome Association of Greater Toledo OH Down Syndrome Association of the Valley OH Down Syndrome Support Network of Stark County OH Miami Valley Down Syndrome Association OH Ohio Valley Down Syndrome Support Group OH Putting Downs First OH Rising Up to Down OH PA Up Side of Downs of Greater Cleveland OH Ups of Down Tri State Down Syndrome Support Group OH Down Syndrome Association of Central Oklahoma OK Down Syndrome Association of Tulsa OK Central Oregon Down Syndrome Network OR Down Syndrome Association of Southern Oregon OR Down Syndrome Network Oregon OR PR North Coast Down Syndrome Network OR Northwest Down Syndrome Association OR Willamette Valley Down Syndrome Association OR Bucks County Down Syndrome Interest Group PA Central PA Down Syndrome Awareness Group PA Centre County Down Syndrome Society PA Chester County Down Syndrome Interest Group PA Down Syndrome Association of Pittsburgh PA Down Syndrome Group of Erie County PA 17
AFFILIATE LIST (in alphabetical state)
Affiliate Down Syndrome Association of Memphis and the Mid-­‐
South State Affiliate State Down Syndrome Association of Central Virginia VA Down Syndrome Association of Greater Richmond VA Down Syndrome Association of Hampton Roads VA Down Syndrome Association of Northern Virginia VA Down Syndrome Association of Roanoke VA Down Syndrome Association of the New River Valley Down Syndrome Association of the Virginia Peninsula Down Syndrome Support Group of the Northern Shenandoah Valley VA Haiden House Foundation VA UVA-­‐Down Syndrome Alliance VA Champlain Valley Down Syndrome Group VT Down Right Special of Rutland County VT Down Syndrome Community WA Hearts of Gold -­‐ Down Syndrome Support WA South Puget Sound Up with Down Syndrome WA Down Syndrome Association of Wisconsin WI Gettin' Down Central Wisconsin WI Madison Area Down Syndrome Society WI Wisconsin Upside Down Foundation Down Syndrome Family Support Group of Raleigh County WI Down Syndrome Network of West Virginia WV Harrison County Down Syndrome Connection WV Up with Downs of Harrison County WV Wyoming Down Syndrome Association WY TN Down Syndrome Association of Middle Tennessee TN Down Syndrome Association of West Tennessee TN Down Syndrome Awareness Group of East Tennessee FRIENDS (Friends Reaching Inspiring Educating Neighbors About Down Syndrome) TN TN BUDS (Better Understanding of Down Syndrome) TX Down by the Border TX Down Syndrome Association of Brazos Valley TX VA VA Down Syndrome Association of Central Texas TX Down Syndrome Association of El Paso TX Down Syndrome Association of Houston TX Down Syndrome Association of San Antonio TX Down Syndrome Foundation of South Texas TX Down Syndrome Guild of Dallas TX Down Syndrome League of Victoria TX Down Syndrome Partnership of Tarrant County TX East Texas Down Syndrome Group TX Greater Clear Lake Families Exploring Down Syndrome TX Heart of Texas Network for Down Syndrome TX International Mosiac Down Syndrome Association TX WV Panhandle Down Syndrome Guild TX Parents of Special Kids Support Group TX Red River Valley Down Syndrome Society TX RGV Discover Life TX Southern Utah Down Syndrome Association UT United Angels Foundation UT Utah Down Syndrome Foundation UT 18
The national advocate for the value,
acceptance and inclusion of people
with Down syndrome.
National Down Syndrome Society
666 Broadway
New York, NY 10012
Telephone: 800-221-4602
Email: [email protected]
www.ndss.org