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GLOBAL DOWN SYNDROME FOUNDATION

Denver, CO   |  www.globaldownsyndrome.org

Mission

The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical care, Education and Advocacy.

We work to educate governments, educational organizations and society in order to affect legislative and social changes so that every person with Down syndrome has an equitable chance at a satisfying life.

Notes from the nonprofit

The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education and Advocacy. Formally established in 2009, GLOBAL’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the United States committed solely to research and medical care for people with Down syndrome. Since Down syndrome is the least-funded genetic condition in the United States, fundraising and government advocacy to correct the alarming disparity of national funding for people with Down syndrome is a major goal.

Ruling year info

2009

President & CEO

Michelle Sie Whitten

Main address

3239 E 2nd Avenue

Denver, CO 80206 USA

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EIN

26-4431001

NTEE code info

Down's Syndrome (G25)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Dare to Play Football Camp with Ed McCaffrey

At the Dare to Play Football Camp with Ed McCaffrey individuals with Down syndrome are welcome to join and learn core touch football skills and team-building activities. The camp is a partnership between Global, Ed McCaffrey and Valor Christian High School. Valor High School Football Coaches serve as instructors for the camp and each camper is paired with a Valor High School Football Player to serve as a Pal for one-on-one attention, assistance and fun.

The camps are available for both males and females ages 8 and above. Each camp consists of 3 practices and culminates in an additional Game Day held at Valor Christian High School with more than 400 people in attendance. After the game there is a Community Celebration Party with complimentary food, beverages, music and other fun activities.

If you have any questions or would like to learn more about Global’s programs please contact us at [email protected], or visit http://www.globaldownsyndrome.org/programs-conferences-grants/programs/

Population(s) Served
People with disabilities

The Denver Broncos Cheerleaders Dare to Cheer Camp & the Junior Denver Broncos Cheerleaders (JDBC) Dare to Cheer Program are affiliated, and run simultaneously, with the Dare to Play Football Camp. The camps and programs provide individuals (age 8+) with Down syndrome the opportunity to learn cheerleading routines, participate in drills, practice dance moves, and experience team-building activities.
Since its inception, the Dare to Cheer camps & programs have served over 300 people with Down syndrome and twice as many people from the community.
It is a partnership between Global and the Denver Broncos Cheerleaders, who serve as cheer instructors.

If you have any questions or would like to learn more about Global’s programs please contact us at [email protected], or visit http://www.globaldownsyndrome.org/programs-conferences-grants/programs/

Population(s) Served
People with disabilities

The Be Beautiful Be Yourself Dance program is comprised of three levels of classes serving individuals with Down syndrome, ages 5-14.
The ballet program is a partnership between Global, the Sie Center for Down Syndrome and the Colorado Ballet.
The program runs 14 weeks at the Colorado Ballet, with spring and fall sessions. Each semester culminates with a performance with over 175 friends, family and supporters in attendance.
Instructors for the program include the Sie Center’s world-renowned physical therapist and Down syndrome expert, Patricia C. Winders, and other professional instructors and dancers from the Colorado Ballet.

If you have any questions or would like to learn more about Global’s programs please contact us at [email protected], or visit http://www.globaldownsyndrome.org/programs-conferences-grants/programs/

Population(s) Served
Children and youth
People with disabilities

The Dare to Play Soccer Camp provides an opportunity for males and females (age 7+) to learn the basics, camaraderie and joy of soccer from college and professional soccer players. The camp is a partnership between Global, Regis University Men’s Soccer and the Colorado Rapids.
Each camper is paired with a Pal from Regis University Men’s Soccer team for one-on-one attention, assistance and fun. Camp includes three practice dates and two game performances! The performance games take place during halftime at a professional Rapids match in front of thousands of fans and at a collegiate Regis University match.

If you have any questions or would like to learn more about Global’s programs please contact us at [email protected], or visit http://www.globaldownsyndrome.org/programs-conferences-grants/programs/

Population(s) Served
People with disabilities

Co-organized with the NDSC, the Global Roundtable is a free benefit and features renowned scientists and medical professionals. Topics include Down syndrome and Cancer, Autoimmune Disease, and Alzheimer’s disease.

Seating is limited – sign up for free with your NDSC registration!

To learn more, please visit: http://www.globaldownsyndrome.org/programs-conferences-grants/conferences/#roundtable

Population(s) Served
Adults
People with disabilities

The GLOBAL Awards are an important benefit for GLOBAL Organization Members. They allow GLOBAL and local member organizations to collaborate on programs that have a direct, positive impact for the people with Down syndrome we serve. Education Awards applications can be for a program, conference, workshop, or webinar related to research, medical care, and/or health outcome improvements for children and/or adults Down syndrome. Target audiences may include people with Down syndrome, family members, and professionals.

Population(s) Served
People with disabilities

The GLOBAL Awards are an important benefit for GLOBAL Organization Members. They allow GLOBAL and local member organizations to collaborate on programs that have a direct, positive impact for the people with Down syndrome we serve. The Global Down Syndrome Foundation Self-Advocate Employment Initiative Awards empower local Down syndrome organizations to hire individuals with Down syndrome. Global hopes that over time dozens if not hundreds of individuals with Down syndrome can become empowered and engaged employees.

Population(s) Served
People with disabilities

The Global Down Syndrome Foundation recently announced that it will produce and publish Medical Care Guidelines for Adults with Down Syndrome. The guidelines, unveiled at the 2016 Down Syndrome Affiliates in Action Conference (DSAIA) in Charlotte, NC, will be a community resource with support from Down syndrome organizations in the United States and vetted by a national clearing house for healthcare guidelines.

In Charlotte, eight local Down syndrome organizations pledged $12,000 to support Global Down Syndrome Foundation’s plan. Since then, many additional Down syndrome organizations, foundations, and individuals have joined in support. The pledges help offset the significant costs associated with creating, vetting, and publishing the guidelines.

The guidelines will be written and published over an 18 month period with the help of a professional working group including Down syndrome medical experts.

The published guidelines will be offered at no cost to self-advocates, physicians, family members, caretakers, and Down syndrome organizations locally, regionally, and nationally.

Population(s) Served
People with disabilities

The Global Down Syndrome Foundation's annual Be Beautiful Be Yourself Fashion Show is the largest fundraiser for Down syndrome in the nation attracting more than 1,200 guests each year. It has raised over $12 Million for Down syndrome research, medical care, advocacy and education. Equally important, it has raised major awareness regarding the shocking disparity of funding for people with Down syndrome, while successfully emphasizing their abilities.

Celebrity also shows up in a big way for our cause. Each year at the event, the Global Down Syndrome Foundation presents the Quincy Jones Exceptional Advocacy Award to people who have used their celebrity to help those with Down syndrome and other developmental disabilities. Recipients include Quincy Jones, DeOndra Dixon, Timothy Shriver, Karen Gaffney, John C. McGinley, Sujeet Desai, Patrick Kennedy, Jamie Foxx, Luke Zimmerman, Kyra Phillips and Tim Harris. In addition, celebrity friends and advocates such as Beverly Johnson, Tom Arnold, Jeff Probst, Chauncey Billups, John Lynch, and Ed McCaffrey make a huge difference by showing up and cheering our models on.

Every year in May or June, we hold model auditions for the fashion show. More and more models are auditioning from out of state, and we encourage this. It is important to note that not everyone is chosen to be a model, but we make sure that the audition itself is loads of fun, and that people who do not get in one year are given extra consideration the next year.

The 2017 Be Beautiful Be Yourself Fashion Show will be held on November 11, 2017 at the Sheraton Denver Downtown Hotel.

To learn more about last year's event, please visit: http://bebeautifulbeyourself.org/about/

To find out how you can get involved in 2017, please contact us at (303) 321-6277.

Population(s) Served
Adults
People with disabilities

I ♥ YOU Dance Parties for adults with Down syndrome are hosted at different venues in Denver and attract about 100 guests per party.

The I ♥ YOU Dance Parties are more than just a night of fun; they promote:
- Independence for self-advocates
- Exercise
- Social interaction between self-advocates and the typical community
- A way to encourage adults with Down syndrome to advocate for themselves

For questions about the I ♥ YOU Dance Parties, please contact Martha Cronen at [email protected] or 303-468-6674.

Population(s) Served
Adults
People with disabilities

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, We don’t have the right technology to collect and aggregate feedback efficiently, The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time

Financials

GLOBAL DOWN SYNDROME FOUNDATION
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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GLOBAL DOWN SYNDROME FOUNDATION

Board of directors
as of 11/28/2022
SOURCE: Self-reported by organization
Board chair

John Sie

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No