2017 Annual Report - National Down Syndrome Society€¦ · advance a wide-ranging advocacy agenda...

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2017 Annual Report The leading human rights organization for all

individuals with Down syndrome.

NDSS Advocates & Friends:

On behalf of the National Down Syndrome Society (NDSS), we are grateful for the generous support and dedication to our mission from

supporters, donors and advocates across the country. NDSS was founded in 1979. For almost forty years, we have been the leading voice and

organization for the Down syndrome community in the United States. This year, marked a historic year with the roll-out of our organization’s new

mission statement - the leading human rights organization of all individuals with Down syndrome.

Today, NDSS is stronger than ever, and as the world’s largest Down syndrome advocacy organization, we have evolved into not just an

organization that serves individuals with Down syndrome and their families. We are an organization representing the interests of all individuals

with Down syndrome across the lifespan and across all areas, including, healthcare and research; inclusive education; employment; community

integration and economic self-sufficiency and at all levels of government supported by state-of-the-art programming areas. Our robust

programming includes:

• A one-of-a-kind National Advocacy & Policy Center in D.C. that promotes results-driven advocacy and activism in our nation’s

capital and in state capitals across the country on legislative issues across the lifespan of individuals with Down syndrome;

• The National Buddy Walk® Program which is the world’s largest and most recognizable Down syndrome awareness program;

• State-of-the-art Community Outreach and Resources platform which supports our vast network of over 380 affiliates in

the United States, and provides the very best information on Down syndrome worldwide in more than 140 different languages;

• Forward-focused Public Awareness initiatives, which show the world that people with Down syndrome not only

deserve to be treated with dignity and respect but also that people with Down syndrome are ready,

willing and ABLE to WORK.

With the passage on the Stephen Beck Jr., Achieving a Better Life Experience (ABLE) Act and widespread adoption of state ABLE programs

in over 25 states, people with Down syndrome (and their families) finally have a chance to save. NDSS continued to advocate for and support

employment opportunities for all individuals with Down syndrome. Our NDSS #DSWORKS® Campaign, the first-ever employment campaign for

people with Down syndrome, continues to engage and educate employers to invest in hiring people with Down syndrome. #DSWORKS® has three

major components to creating meaningful and competitive employment opportunities for individuals with Down syndrome. We create, collect and

disseminate comprehensive resources for employers, families and local Down syndrome organizations, educate federal and state lawmakers and

advance a wide-ranging advocacy agenda to break down barriers to employment. Further, we collaborate with corporations and businesses to

create opportunities to hire individuals with Down syndrome in all business sectors through our #DSWORKS® Employer Roundtable.

Our NDSS National Buddy Walk® Program had a record-breaking year in 2016. More than 335,000 participants raised more than $14 million for

the Down syndrome community, 97% of which stays in our local communities. Our NDSS Buddy Walk® Program was ranked among the top 30

fundraising events nationwide, ranked No. 29 for money raised, No. 12 for number of events and No. 5 for overall number of participants.

In addition to the exciting mission statement and robust programs and services led by our dedicated staff, under the direction of the NDSS

Board of Directors and leadership, NDSS sold a significant organizational asset this year. With the goal of expanding resources from the sale

into our mission and programs as well as allowing local Down syndrome affiliates and Buddy Walk® communities to maintain additional local

resources and expand their programs in advocacy and employment for all people with Down syndrome.

At NDSS, we envision a world in which all people with Down syndrome have the opportunity enhance their quality of life, realize their life

aspirations, and become valued members of a welcoming and supportive community. We invite you to join us on this journey focused on

advocacy and activism, and help us create a more inclusive society where individuals with Down syndrome are treated with respect in the

United States and in all corners of the world. On behalf of our Board of Directors and staff, we are beyond grateful all you do for NDSS and

people with Down syndrome each and every day.

Onward and upward,

Sara Hart Weir, MS Capt. Robert P. Taishoff USN (ret.)

President Chairman

2 2017 NDSS Annual Report

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The National Down Syndrome Society (NDSS), established in 1979, is the leading human

rights organization for all individuals with Down syndrome. At NDSS, we envision 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 has four cutting-edge, state-of-the-art programmatic pillars that support our platform

as the largest nonprof it organization in the US representing people with Down syndrome

and their families. These programmatic pillars include the following:

• National Advocacy & Public Policy Center

• National Buddy Walk® Program

• #DSWORKS® Campaign

• Down Syndrome Community Outreach & Support

NDSS has worked since 1979 to support 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 her daughter, Carson, who happens to have

Down syndrome. After Carson’s birth, Elizabeth and her husband, Barton, soon discovered

that support and resources available to parents of a child with Down syndrome were very

limited.

MISSION STATEMENT

The mission of NDSS is to be the leading human rights organization for all individuals with

Down syndrome.

VISION STATEMENT

At NDSS, we envision 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.

“As parents of a

beautiful little girl

with Down syndrome,

we don’t view any

aspect of her needs

as unique or special.

Her needs are human.

As with any child,

Liliana has the human

right to be included

in her community, an

opportunity to chase

her dreams, and

succeed. Our family is

proud to support NDSS’

mission advocating for

the human rights of all

individuals with Down

syndrome.”

- McLuckie Family

About the National Down Syndrome Society

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4 2017 NDSS Annual Report2017 NDSS Annual Report

NDSS’s National Advocacy & Public Policy Center, located in Washington, D.C., advocates

for federal, state and local policies that positively impact all people with Down syndrome

across the country. Our comprehensive legislative agenda is centered around f ive

important areas: healthcare & research, education, economic self-suff iciency, community

integration and employment. We focus on legislation that would improve the lives of

people with Down syndrome. These priorities have been shaped by self-advocates,

families, aff iliate leaders and others under the direction of the NDSS Board of Directors.

NDSS is the leading voice for people with Down syndrome in our nation’s capital and in

state capitals across the country. Our NDSS National Advocacy & Public Policy Center:

• Works with Congress, Federal Departments and Federal Agencies to develop

and advance legislation and improve regulations and other policies supported by its

comprehensive legislative agenda

• Trains and educates self-advocates, parents and others to advocate on the local, state

and federal levels to positively impact the lives of people with Down syndrome

• Organizes and participates in national and state coalitions that support and help

advance the Down syndrome legislative agenda in Washington, D.C

• Leads the only state-of-the-art national and statewide advocacy program for the Down

syndrome community

As the leading human rights organization for all individuals with Down syndrome, NDSS

wants to ensure advocates across the country understand advocacy and how to get

involved. NDSS leads an advocacy program which includes our NDSS-DS AMBASSADOR®

Program, as well as our annual NDSS Buddy Walk® on Washington.

National NDSS Advocacy & Public Policy Center

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Being part of the NDSS DS-AMBASSADOR® Program is truly amazing; NDSS has given my daughter

and me support, guidance and a voice we didn’t know we had. We continue to break barriers and

misconceptions about individuals with Downs Syndrome while making a positive impact in our

community by advocating and making a difference for all individuals with Down syndrome.

-Elvia Kahyaoglu and Janissa Lloyd

Our individual stories, experiences and voices can make a difference. However, the NDSS DS-

AMBASSADOR® Program is empowering…it allows the voices of many to come together to be stronger

and louder. Being an NDSS DS-AMBASSADOR® Program allows Katie and I to be promoters of positive

change and work together with many diverse individuals for the common good of all people with Down

syndrome. -Traci and Katie Lambert

Simply put, NDSS is part of our family. The moment your son or daughter with Down syndrome is born,

NDSS becomes part of your life, just like grandparents, aunts, uncles and cousins. Our NDSS family

fights for us and our families every day! NDSS is family to me. I call this family “NDSS Zarate”.

-Sergio Zarate

The NDSS DS-AMBASSADOR® Program was established in 2012 and is the f irst-

ever grassroots advocacy network for the Down syndrome community. NDSS DS-

AMBASSADOR® participants are volunteer advocates – seasoned and new – that are

committed to participating in the democratic process and serving as liaisons between

NDSS and their Congressional delegations. The overarching goal of the NDSS DS-

AMBASSADOR® Program is to build long-lasting relationships with U.S. Members of

Congress to help NDSS continually raise awareness, educate and advocate for public

policy solutions that benefit the Down syndrome community.

The key objectives of the NDSS DS-AMBASSADOR® Program are to:

• Strengthen and organize the Down syndrome community’s grassroots advocacy

network across the U.S.

• Build relationships in Washington, D.C., with Members of Congress and

Congressional staff

• Engage more aff iliates and advocates to provide valued input and feedback to NDSS

• Encourage more advocates to become active in supporting legislative efforts that are

beneficial to the Down syndrome community

• Grow the NDSS DS-AMBASSADOR® Program to 435 participants – one for each

congressional district in the U.S

NDSS DS-AMBASSADOR® Program

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Buddy Walk® on Washington is so important because we get to talk to important people who make decisions and they need to meet me to know how to make decisions about me. - Sean McElwee

The Buddy Walk® on Washington is the best annual advocacy event in the country. Empowering our self-advocates to speak to the legislators on issues that directly impact them is much more effective than anyone else speaking on their behalf.- Sandra McElwee

Our NDSS Buddy Walk® on Washington is an annual two-day conference that involves a

day of advocacy training and networking followed by a full day of meetings with Members

of Congress and Congressional Brief ing on Capitol Hill. The Buddy Walk® on Washington

was given its name to maintain the message of the National Buddy Walk® Program - to

educate, advocate and celebrate Down syndrome. The funds raised by our National Buddy

Walk® Program directly support the annual NDSS Buddy Walk® on Washington and the

work of NDSS’s Advocacy & Public Policy Center.

During the NDSS Buddy Walk® on Washington, participants receive advocacy training

and meet with Members of Congress and their staff on Capitol Hill to advance education,

research and healthcare for people with Down syndrome. The experience is perfectly

suited to self-advocates, family members, professionals, aff iliate leaders and members and

anyone else who wants to make a difference for people with Down syndrome. No previous

advocacy experience is required. At the Buddy Walk® on Washington, NDSS also presents

its annual Champion of Change Awards.

NDSS National Buddy Walk® Program

Since 1995, the Buddy Walk® continues to be the premier awareness and advocacy peer-

to-peer fundraising program in the world. The Buddy Walk® was created by NDSS to

promote acceptance and inclusion of people with Down syndrome and to raise funds for

local and national initiatives that support people with Down syndrome and their families.

97% of the funds raised by the Buddy Walk® program stay in local communities to support

Down syndrome aff iliate programming and activities.

NDSS 2016 Accomplishments:• Over $14.2 million was raised in more than 252 Buddy Walk® events across the

country and around the world to support local programs and services and NDSS’

advocacy initiatives

• More than 330,000 participants were involved with the Buddy Walk® in 2016

• Since 2008, the National Buddy Walk® program has been ranked in the top 30

fundraising events nationwide by the Peer-to-Peer Professional Forum. In 2016

the Buddy Walk® program ranked number 29 for money raised, number 12 for number

of events and number 5 for number of participants

• The Buddy Walk® program has expanded internationally with events in Japan,

New Zealand, Trinidad and Canada

Our secret has always been

ice, syrup and inspiration. We

continue to break through so

many barriers and never let

society cloud our expectations

for Blake. We lean on the

people that believe in us and

believe in Blake. Working

with DSWORKS® has given

our family the opportunity

to spread Blake’s story and

inspire society to never place

limits anyone and to believe in

your children.

- The Pyron Family

NDSS Buddy Walk® on Washington Advocacy Conference

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2017 NDSS Annual Report

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The MDSC Buddy Walk® program has grown over the past 21 years to become the largest public awareness platform in New England to promote the acceptance and inclusion of people with Down syndrome. We say our Buddy Walks are the “best days of the year” at the MDSC where individuals with Down syndrome and their families come together to celebrate the immeasurable value that people with Down syndrome bring to the world. -Maureen Gallagher, Executive Director of Massachusetts Down Syndrome Congress The Buddy Walk® is an incredible day of celebration for the Dallas community that aims to raise awareness and hope for a better world for all people with Down syndrome. Our families look forward to this event all year long, and the Down Syndrome Guild of Dallas is honored to host one of many walks across the country that celebrates the abilities and accomplishments of people with Down syndrome. - Jennifer Ford, Executive Director of Down Syndrome Guild of Dallas

Although in just its 4th year, the Baltimore Buddy Walk® is an event that has united and galvanized our local Down syndrome community while inspiring, informing, and promoting awareness in the community at large. There is an uplifting atmosphere that is truly unique to this event.- Brian Coughlin, Chesapeake Down Syndrome Parent Group

NDSS National Buddy Walk® Program, continued

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“

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The Chicagoland Buddy Walk® is turning 15 this year. It’s amazing that we started out

with a walk of about 200 and now this year we are expecting over 4000! No matter how

big it’s always a great family event that I look forward to each year. The inspiration and

energy is amazing” - Jennifer Paganessi, Chicagoland Buddy Walk®

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NDSS New York City 21st Buddy Walk®


The 2016 Buddy Walk® took place at The Great Hill in Central Park on Saturday, September

17, 2016 and over 2,000 participants attended. Our event kicked off at 10 AM with a video

presentation in Times Square. Over 450 photos of self-advocates are displayed on The

ClearChannel Spectacolor Video board in the heart of Times Square. Participants then

headed to the Great Hill in world famous Central Park for the 21st Annual New York City

Buddy Walk®! Self-advocates danced and played carnival games all afternoon. NDSS

honored self-advocates, community leaders and organizations who raise awareness for the

Down syndrome community everyday.

AnnaRose Rubright served as Grand Marshal, Tyler Caldwell was awarded the 2016 Dan

Piper Award and Changing the Face of Beauty was recognized as Organization of the Year

at our 2016 New York City Buddy Walk®.

Educate • Advocate • CelebrateDown Syndrome

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#DSWORKS® Campaign

NDSS launched #DSWORKS® – the f irst-ever employment campaign aimed at showing the

world that people with Down syndrome are ready, willing and ABLE to work – in 2016. The

goal of #DSWORKS® is to create meaningful employment careers for individuals with Down

syndrome by encouraging businesses, from Main Street to Wall Street, to invest in hiring

individuals with Down syndrome; and by advocating before Congress on a wide variety

of legislation to break down barriers to allow all individuals with Down syndrome to have

access to meaningful careers.

Unfortunately, the unemployment and poverty rates for Americans living with disabilities

are twice as high as those living without disabilities. Systemic barriers to employment such

as the $2,000 asset limitation and low monthly income limitations (an average of $1,400

per month) under federal benefits programs hold individuals back from seeking full-time,

competitive employment opportunities. NDSS’ #DSWORKS® Campaign aim is simply to

create meaningful career opportunities by investing in the following overarching areas:

Employment ResourcesNDSS maintains a comprehensive repository of employment resources for everyone

involved in the employment process including self-advocates, employers, job coaches,

professionals, academic and parents. Our NDSS #DSWORKS® webinar series and other

resources, all available in print and web-based, focus on offering a wide-variety of

information to help educate stakeholders on key aspects of employment including our

NDSS Employer Guide: Valued, Able & Ready to Work: Employing Individuals with Down

syndrome.

Legislative Agenda NDSS is advancing a comprehensive federal and state legislation agenda that breaks

down archaic legislative barriers to employment, supports equal compensation and fair

wages for people with Down syndrome and creates incentives to hire individuals with

Down syndrome across all types of employers. NDSS is currently advocating for federal

legislation like ABLE to Work Act and state legislation like Employment First policies, the

elimination of subminimum wage and the expansion of f inancial literacy and options for

people with Down syndrome.

#DSWORKS® Employer Roundtable Partnerships NDSS’ Employer Roundtable engages with businesses – from Main Street to Wall Street, to

work together to create and expand employment opportunities for individuals with Down

syndrome. NDSS is proud to be working with many like-minded businesses, among them,

Voya Financial, Blake’s Snow Shack, Alix Partners, Starbucks, DC Capitol Candy Jar, Little

Caesar’s and the New Jersey Devils.

Ready, Willing, and ABLE to WORK

DSWORKS®


#DSWORKS® Program, continued


Gina, pictured left, of Maryland, was able to purse her dream of starting a career at a candy company. Gina is now proud to say she works for the Capital Candy Jar, a DC-basedsmall business. Gina is living her dream in a supportive and inclusive environment. Gina has expressed that she is proud of herself. When Gina returns to school, Capital Candy Jar plans on hiring another individual with Down syndrome!

John, from New York, made his love for crazy socks into a career! Each day, John spreads love and happiness through his socks and his passion. After less than a year in the business, John is making six figures selling hissocks. John and his father Mark are great #DSWORKS® Partners and continue to show the world that people with Down syndrome are ready, willing and able to work!

Hiring People with Disabilities Is Good for The Bottom Line!

Studies show nearly identical job performance ratings, similar amount of

supervision required, minimal cost of accommodations, higher retention rate,

higher employee morale, builds customer loyalty and expands customer base.

By calling on the communities we live in to make the inclusion of people living

with disabilities a reality, we take a step in the right direction in the fight for

equality in the workplace.

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DJ Joey – Better known as Joey Agostino is a vibrant young man with a dream of being a DJ. Joey was the winner of the 2015 Ethan Saylor Scholarship Award. This award is given to an individual who embodies the spirit of Ethan Saylor. Joey had a dream of being a DJ and specifically performing in California! NDSS and the Ethan Saylor Scholarship award made Joey’s dreams come true. In August 2017, DJ Joey landed a gig with the women’s retailer, LuLaRoe. Team NDSS and LuLaRoe flew Joey to California to DJ in front of 1800 people! DJ Joey rocked the house and proved to not only himself but so many others that dreams do come true! AnnCatherine Heigl, pictured left, was told she would never attend college. Better known as “AC”, is the first student from Indiana to be accepted into the George Mason Life Program. AC received the prestigious O’Neill Tabani Enrichment Fund scholarship that would help her be just like her sisters and attend college. AC and her family spent many hours filling out those college applications and received acceptance letters from the programs at George Mason and Clemson University. The Heigls are thrilled for AC and hope that AC’s success shows other parents that college is a possibility.

NDSS is proud to work with a network of more than 380 local Down syndrome aff iliates

across the country to provide an array of benefits to help better service the Down

syndrome community.

Through our Information and Referral Center, NDSS receives more than 10,000 requests

a year for information on Down syndrome. NDSS responds to questions from parents,

professionals, self-advocates and other interested individuals. Our toll-free helpline

and email service is supported by a translation service that can be accessed in over 150

languages.

NDSS continues to provide the most up to date information on Down syndrome. NDSS

publishes guides and information brochures in both English and Spanish. Publications

provide comprehensive information across the lifespan of individuals with Down syndrome.

NDSS Research Roadshows To improve the effectiveness of clinical studies related to Down syndrome, NDSS

partnered with the Down Syndrome Association of Greater Cincinnati, Cincinnati Children’s

Hospital Medical Center, and the Emory University School of Medicine to organize a

research awareness conference on April 23, 2016. Specif ically, the purpose of the event

was to educate families in the greater Cincinnati area on the importance of clinical studies,

increase participation in DS Connect (the Down syndrome patient registry), and enroll

individuals in local and national research studies, including the national DS360 Project,

spearheaded by Dr. Stephanie Sherman at Emory University. The conference, which was

attended by more than 125 family members, self-advocates and medical professionals, was

the third such event funded by the NDSS Research Innovation and Development Fund.

NDSS Scholarship ProgramsNDSS is proud to offer various annual

scholarships and grants for self-advocates,

including, the O’Neill Tabani Enrichment

Fund, the #DSWORKS® Blake Pyron

Entrepreneurship Scholarship and the

Ethan Saylor Memorial Scholarship. Each

scholarship provides individuals with the

opportunity to enhance their lives whether

it be through education, business or getting

started on their lifelong dream.

NDSS Down Syndrome Community Outreach & Support

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NDSS Launches #TeamNDSS in January 2017

Team NDSS is a group of individuals dedicated to spreading the mission of NDSS and

spreading awareness about Down syndrome through sports and training. Team NDSS is

comprised of f ive areas:

Within these areas we are dedicated to health and wellness, advocacy, and fundraising.

Anyone, including self-advocates, family members, friends and athletes can join

#TeamNDSS and raise awareness for Down syndrome through their sport of choice. During

our inaugural year, almost 100 Athlete Ambassadors signed up and held various events.

The largest event was the virtual Race for 3.21 on World Down Syndrome Day. People from

across the globe covered 3.21 miles in a variety of ways to raise awareness and spread the

mission of NDSS. We formed charity racing teams for the LOVE Run in Philadelphia, March

2017, the New York City Marathon, November 2017, and will have 100 people racing during

the Disney Marathon Weekend in January 2018.

To date we have almost 100 athlete ambassadors on the team from various athletic

backgrounds. As an Athlete Ambassador, team members are involved in local, state,

national and/or international races and sporting events and are active in their community.

They volunteer in their local areas, training and participating in events and races,

promoting health and f itness and assisting NDSS with sporting events, campaigns and

initiatives. Athlete Ambassadors spread the NDSS mission by building awareness, sharing

knowledge, promoting acceptance and highlighting the abilities of individuals with Down

syndrome. Several self-advocates participated on our Athlete Ambassador team.

MEET OUR NDSS ATHLETE AMBASSADORSGarrett Holeve: MMA (Mixed Martial Arts) Fighter, who won the title of being named as f irst

ever MMA Bantam weight champion in June 2017. Because of him, athletes are now being

included in the sport of MMA.

Kayleigh Williams: Made history as the f irst person with Down syndrome to f inish the

Austin Half Marathon in February 2017.

Hallie Strickler: Received her Zumba instructor certif ication in June 2017 and is working

hard to learn new routines to begin teaching classes in her hometown in Kansas.

Andrew (Bob) Hammer: Andrew is an avid outdoorsman who loves to hike and climb. In

August 2017, he will make history as the f irst person with Down syndrome to climb the

Grand Tetons along with his future brother-in-law.

• Athlete Ambassador Program

• Charity Racing

• Individual Donor Events

• Community Events & Health

• Fitness Programs


“Inspired by our little man James,

Team 3J put together a 3.21 race that

included runners, walkers, bikers, and

rollerbladers. We had approximately

70 participants and raised $3885 for

the National Down Syndrome Society.

With the continued help of the area

residents, businesses, and volunteer

groups, we believe that we have

started a yearly tradition!”

- Jamie Lewis

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NDSS 20th Annual Golf OutingFor 20 years, a group of dedicated golfers and NDSS supporters gather to play golf and

raise funds for the NDSS. This year’s event took place on June 20, 2016 at Baltusrol Golf

Club in Springf ield, NJ. NDSS honored Proskauer Rose, LLP at the event. Proskauer, an

international law f irm, well known for its labor and employment, litigation, corporate private

equity, f inance and intellectual property law departments.

Proskauer has been a strong supporter of the NDSS #DSWORKS® employment campaign

and is currently working with NDSS on the “Even Strength” Program. Through the efforts of

Proskauer’s team, the New Jersey Devils have agreed to participate in the program during

the 2016-2017 NHL season. Even Strength is designed for individuals with Down syndrome

to be a part of the game day operations of the NHL member club, in a variety of ways.

NDSS and Proskauer have teamed up to get the program off the ground and have a goal to

have all 30 NHL member clubs participating over the next several seasons.

NDSS 31st Annual Gala & AuctionOur 31st Annual Gala and Auction, themed “Old Hollywood”, took place on March 30, 2017

at Gotham Hall in New York City. The gala is an annual black tie event to raise funds and

bring awareness for the Down syndrome community. We honored Saut: The Voice of Down

Syndrome Society, for their collaboration with NDSS to advance awareness, advocacy

and activism for the Down syndrome community. This collaboration will allow us to share

with the community our partnership’s joint initiatives spanning education, employment,

and advocacy. The CEO of Saut: The Voice of Down Syndrome Society, Ms. Fatima Malak,

graciously accepted the award.

NDSS also honored HRH Princess Rima bint Sultan from the Kingdom of Saudi Arabia, for

her philanthropic work. She is a strong advocate for individuals with special needs and

plays a pivotal role in their empowerment by supporting organizations and projects that

help them manifest their capacities and live to their fullest potential.

NDSS CARING with Congress On July 13, 2016, NDSS held its annual “Caring with Congress” event in Washington, DC,

hosted by the bipartisan members of the Congressional Task Force on Down Syndrome.

The event raises funds for the NDSS Research Innovation and Discovery Fund. The Fund

supports Down syndrome research advocacy that highlights promising developments and

missing gaps; innovative public-privacy partnerships; and alliances related to co-occurring

conditions, such Alzheimer’s disease and autism.

NDSS wishes to recognize and thank the 2016 event’s corporate sponsors, which

included the Advanced Medical Technology Association, the Pharmaceutical Research

and Manufacturers of America, Fluor Corporation, Federated Investors, the Independent

Insurance Agents and Brokers of America, Koch Industries, MasterCard, the National

Association of Realtors, the National Association of Mutual Insurance Companies, New

York Life, Rite Aid, the American Financial Services Association, the Biotechnology

Innovation Organization, the Council of Insurance Agents and Brokers, the Walt Disney

Company, Google, the Investment Company Institute, the W Group, the Altria Group, K&L

Gates, Maggiano’s Little Italy, Prudential Financial and Coca Cola.

NDSS Awareness & Special Events


Assets

Cash and cash equivalents

Contributions receivable

Investments, at fair value

Accrued interest receivable

Prepaid expenses and other assets

Property and equipment, net

Total Assets

LIABILITIESAccounts payable and accrued expenses

Deferred rent

Deferred revenue

Other liabilities

Total Liabilities

NET ASSETSUnrestricted:

Undesignated

Board designated:

Endowment

Temporarily restricted

Permanently restricted

Total Net Assets

Total Liabilities & Net Assets

2017

$ 479,112

$ 1,831,612

$ 9,813,396

-

$ 115,091

$ 24,752

$12,263,963

$ 263,800

$ 86,193

$ 52,980

-

$ 402,973

$ 4,116,024

$ 6,200,000

$ 471,525

$ 1,073,441

$ 11,860,990

$ 12,263,963

2016

$ 244,522

$ 84,352

$ 3,175,685

$ 3,022

$ 94,054

$ 258,386

$3,860,021

$ 177,753

-

$ 13,314

$ 13,110

$204,177

$ 2,204,526

-

$ 377,877

$ 1,073,441

$ 3,655,844

$ 3,860,021

Statements of ActivitiesYEAR ENDED MARCH 31, 2017

Statements of Financial PositionYEAR ENDED MARCH 31, 2017

Liabilities and Net Assets

Revenue & Other Support

Contributions

National Buddy Walk

In-kind Contributions

Special Events

Less: Direct Benefit Costs

Rental Income

Less: Related Occupancy Expenses

Booklets, Films and Educational Materials

Merchandise Sales

Conference Income

Miscellaneous Income

Net Assets Released from Restrictions

Total Revenue and Other Support

Expenses

Program Services

Public Policy

Public Awareness

Buddy Walks

Community Relations

Total Program Services

Support services

Management and General

Fund Raising

Total Supporting Services

Total expenses

Change in Net Assets Before Investment Income

and Gain on Sale of Office Condominium

Investment Income (loss)

Gain on Sale of Office Condominium

Change in Net Assets

Net Assets, Beginning of Year

Net Assets, End of Year

Total

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Statements of ActivitiesYEAR ENDED MARCH 31, 2017

UNRESTRICTED

$ 2,379,982

-

$ 121,860

$ 377,851

$ 22,740

-

-

$ 17,221

$ 6,003

$ 702,141

$ 3,627,798

$ 786,971 (409,120)

22,740

-

$ 410,260 $ 332,515 $ 301,395 $ 515,281 $ 1,559,451

$ 329,392 $ 229,600 $ 558,992

$ 2,118,443

$ 1,509,355 $ 675,730 $ 5,926,413$ 8,111,498

$ 2,204,526 $ 10,316,024

TEMP. RESTRICTED

$ 179,813 $ 481,173

-

-

-

-

-

-

-

-

(702,141)

(41,155)

PERMANENTLY RESTRICTED

-

-

-

-

-

-

-

-

-

-

-

-

-

2017

$ 2,559,795

$ 481,173

$ 121,860

$ 377,851

$ 22,740

-

-

$ 17,221

$ 6,003

-

$ 3,586,643

2016

$ 864,305

$ 530,316

$ 108,554

$ 334,412

$ 65,364

$ 11,356

$ 11,946

$ 10,640

$ 1,122

-

$ 1,938,015

- - - - -

- - -

-

$ (41,155)$ 134,803 -$ 93,648

$ 377,877 $ 471,525

- - - - -

- - -

-

----

$ 1,073,441 $ 1,073,441

$ 410,260 $ 332,515 $ 301,395 $ 515,281 $ 1,559,451

$ 329,392 $ 229,600 $ 558,992

$ 2,118,443

$ 1,468,200 $ 810,533 $ 5,926,413$ 8,205,146

$ 3,655,844 $ 11,860,990

$ 342,799 $ 324,101 $ 332,161 $ 571,587 $ 1,570,648

$ 215,075 $ 273,998 $ 489,073

$ 2,059,721

$ (121,706)$ (96,694)-$ (218,400)

$ 3,874,244 $ 3,655,844


NDSS Staff

Sara Hart Weir, MSPresident

Josh HillExecutive Assistant to the President

Kandi PickardChief of Staff

Ashley HelsingDirector of Government Relations

Michelle RayDirector of Inclusive Health and Sports

Colleen HatcherCommunity Outreach and Engagement

Manager

Melissa RobertsonOffice Manager

Nicole PattonGrassroots Advocacy Manager

Khadijah FarmerCommunity Outreach Associate

Jessica KussAthlete Ambassador Program Associate

Michelle SaganBuddy Walk® Program Associate

Rachel GrimmSpecial Events and Conference

Coordinator

Emily Kaczmarczyk#DSWORKS® Outreach Coordinator

Caleb HerrDigital Media Technical Specialist

Jamie DolanInformation & Referral Assistant

Adrian Forsythe Advocacy Programs Assistant

Sara Jo SoldovieriNDSS Taishoff Inclusive Education Fellow

Vince Randazzo Public Policy Advisor

17

NDSS Board of Directors

Office Locations

Social Media

Elizabeth F. GoodwinFounder

CAPT Robert P. Taishoff USN (ret)Chairman

F. Gordon Spoor, CPA, PFS, CGMAVice Chairman

Tiffany BarfieldSecretary

Ben WrightTreasurer

National Down Syndrome Society, Headquarters

8 E 41st Street

8th Floor

New York, NY 10017

Facebook: @NDSS979

Twitter: @NDSS

Instagram: @ndssorg

YouTube: NDSSorg

Amy G. Allyn

Chris Brooks

Paul Brunswick

Janet Slaughter Eissenstat

Steve Freeman

Sean Fromm

Charles H. Gerhardt, III, JD

Anthony (Tony) J. Gostkowski

Annette Halprin

Rick Kosmalski

Honorable Jim Nussle

Roger Reeves, PhD

Charles Symington

Erin Thompson

Laurie Walters

Tim Wilbricht

Sara C. Wolff

NDSS National Advocacy & Public Policy Center

1100 H Street NW

Suite 1030

Washington, DC 20005


About Down Syndrome

Down syndrome is a genetic condition that occurs in approximately one in every 700

babies born in the United States. It is the most frequently 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. People with Down syndrome have an increased risk

for certain medical conditions such as congenital heart defects, respiratory and hearing

problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. However, many

of these conditions are now treatable, so most people with Down syndrome lead healthy

lives. Life expectancy for people with Down syndrome has increased dramatically in recent

decades – from 25 to 1983 to 60 today.

People with Down syndrome experience cognitive delays, but the effect is usually mild

to moderate and is not indicative of the many strengths and talents that each individual

possesses. Children with Down syndrome learn to sit, walk, talk, play and do most other

activities; only somewhat later than their peers without Down syndrome.

Quality educational programs, a stimulating home environment, good health care and

positive support from family, friends and the community enable people with Down

syndrome to develop their full potential and lead fulf illing lives. People with Down

syndrome attend school and work and contribute to society in many wonderful ways.

Researchers are making great strides in identifying the genes on chromosome 21 that cause

the characteristics of Down syndrome. Many feel strongly that it will be possible to improve,

correct or prevent many of the problems associated with Down syndrome in the future.

2017 Annual Report The leading human rights organization for all

individuals with Down syndrome.

2017 Annual Report - National Down Syndrome Society€¦ · advance a wide-ranging advocacy agenda...

Documents

Transcript of 2017 Annual Report - National Down Syndrome Society€¦ · advance a wide-ranging advocacy agenda...