GLOBAL’s Virtual Be Beautiful Be Yourself Fashion Show attracts an impressive roster of celebrities with a NEW DATE – Saturday, November 14, 2020

Press Contacts:

Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832
Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494

DENVER, CO August 26, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced two powerful women who will receive this year’s Quincy Jones Exceptional Advocacy Awards: Grey’s Anatomy star Caterina Scorsone and Spanish model Marián Ávila. Celebrities are showing up in full force to support GLOBAL and honor the accomplished awardees.

The awards will be presented during GLOBAL’s annual Be Beautiful Be Yourself Fashion Show, the largest fundraiser for Down syndrome in the world, having raised over $20 million for life-changing research and medical care. Due to COVID-19 and restrictions on in-person gatherings, the event will be held virtually with a new date: Saturday, November 14, 2020.

Caterina Scorsone has starred in numerous television and film roles, portraying powerfully complex characters that have captured the hearts of audiences around the world. She is most well-known for playing the reckless, yet compelling “Dr. Amelia Shepherd” on ABC’s Grey’s Anatomy. Scorsone has three beautiful children including her three-year-old, Pippa, who was born with Down syndrome. Since the birth of Pippa, Scorsone has been a consistent supporter of GLOBAL’s work. For the last three years, Scorsone has used her formidable platform to promote greater understanding and awareness, end stigmas around people who are differently-abled, and to encourage greater access and inclusion.

Marián Ávila is an accomplished Spanish model from Barcelona, who happens to have Down syndrome. She has modelled in ad campaigns for big name brands like Levi’s and El Corte Ingles and participated in the fashion industry’s biggest Fashion Weeks, including New York Fashion Week. She has been featured in worldwide media, including leading publications such as New York Times, Vanity Fair, and Harper’s Bazaar. Ávila uses social media to meet other people and gain visibility, without judgements or labels, and to help others. She calls herself a feminist and an advocate of human rights, family, and friendship.

Other confirmed celebrities include Academy and Grammy Award winner Jamie Foxx; award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, and Megan Bomgaars; Denver Broncos’ Brandon McManus, world-renowned swimmer Karen Gaffney, and Colorado Rapids’ Kellyn Acosta; award-winning speakers, journalists, and TV anchors DeOndra Dixon, Frank Stephens, Kyra Phillips, John Roberts, Kim Christiansen, and Tom Green; R&B power couple Ronnie & Shamari DeVoe; and supermodel Amanda Booth. More celebrities and self-advocates will be announced in the coming weeks.

The Be Beautiful Be Yourself Fashion Show will consist of a VIP Reception with more intimate celebrity experiences for table sponsors and a quality virtual event on Saturday November 14, 2020. The event will feature GLOBAL’s 2020 Ambassador Walt Snodgrass, 18 beautiful models from 7 states and 2 countries, honorees and celebrities, and special segments including a dance battle between GLOBAL Ambassador DeOndra Dixon and her big brother Jamie Foxx.

“I know that COVID-19 has led to tough times for so many,” says GLOBAL Ambassador DeOndra Dixon, “but we have to pull together and continue to support GLOBAL and people with Down syndrome in need. I will miss the runway and the audience, but I am excited to make the virtual event a success and beat my brother in an epic dance battle!”

“Most people with Down syndrome are high risk for COVID-19, so we have put a lot of effort into education and protection over the last five months,” says GLOBAL President and CEO, Michelle Sie Whitten. “The pandemic has presented GLOBAL with many challenges this year, and we’ve met each one with strength, clarity of purpose, and compassion. We hope that people will support our first virtual event and that they know we will work hard to truly save and transform lives.”

In response to the world-wide pandemic, GLOBAL has worked hard to get out multiple versions of an informative Q&A on COVID-19/Down syndrome, provide over 140 families and 42 Down syndrome organizations with COVID-19 Emergency Relief Global Grants, and support legislation that fights discrimination against those with disabilities during crisis triage care situations.

The Be Beautiful Be Yourself Fashion Show allows GLOBAL to protect people with Down syndrome during this pandemic with their COVID-19 initiatives, provide world-class care to over 2,000 patients with Down syndrome from 28 states and 10 countries, and fund over 200 scientists working on Down syndrome research with a focus on Alzheimer’s disease, cancer, and autoimmune disorders. The event also underwrites our advocacy in D.C., resulting in a tripling of the National Institutes of Health Down syndrome research budget, as well as outreach to over 12,000 families.

To support GLOBAL’s work, please consider a donation.
To learn more, visit: www.bebeautifulbeyourself.org
To buy tickets, visit: https://bebeautifulbeyourself.org/buy-tickets/

 

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

SPRING 2020

Government Funding for Down Syndrome Research Triples – What This Could Mean for Children & Adults with Down Syndrome

What You Need to Know

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Overview

The exciting new Down syndrome research at the National Institutes of Health (NIH) and the NIH INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE). How families and Down syndrome organizations can participate in, and benefit from research. How to use powerful medical registry resource, DS-Connect®, under the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD), and learn about research opportunities. A new clinical trial aimed at normalizing immune function in Down syndrome to cure autoimmune skin conditions and improve cognitive function and quality of life. The Crnic Institute Human Trisome ProjectTM, the most ambitious dataset for people with Down syndrome that serves as a discovery engine aimed at the diseases that people with Down syndrome are highly predisposed to (e.g. Alzheimer’s disease and autoimmune disorders) and protected from (e.g. solid tumor cancers).

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Speakers

Dr. Melissa Parisi Chief, Intellectual & Developmental Disabilities Branch, Eunice Kennedy Shriver NICHD National Institutes of Health (NIH), DS-Connect® Registry Manager

Dr. Joaquín Espinosa Executive Director, Linda Crnic Institute for Down Syndrome, Professor of Pharmacology, University of Colorado

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PDF Presentation: Download Government Funding for DS Research

Dr. Melissa Parisi

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PDF Presentation: Download Scientific Research in the INCLUDE Era

Dr. Joaquín Espinosa

GLOBAL Webinars Archive

Jamie Foxx, DeOndra Dixon, Caterina Scorsone, John C. McGinley, Walt Snodgrass and more support the World’s Largest Event Benefitting People with Down Syndrome

Press Contacts:

Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832 Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494

DENVER, CO June 30, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced an impressive roster of dedicated celebrity supporters for its marquee Be Beautiful Be Yourself Fashion Show scheduled for Saturday, October 3. The annual event is the largest fundraiser for Down syndrome in the world, raising over $20 million to date for life-saving and transformative research and medical care.

The star-studded roster includes Academy and Grammy Award winner Jamie Foxx; award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, Megan Bomgaars, and Caterina Scorsone; Denver Broncos’ Brandon McManus, world-renowned swimmer Karen Gaffney, and Colorado Rapids’ Kellyn Acosta; award-winning speakers, journalists, and TV anchors DeOndra Dixon, Frank Stephens, Kyra Phillips, John Roberts, Kim Christiansen, and Tom Green; R&B power couple Ronnie & Shamari DeVoe; and supermodel Amanda Booth. A full roster of celebrities will be announced in the coming weeks.

The event will honor GLOBAL Ambassador Walt Snodgrass from Omaha, Nebraska. Walt is a sophomore at Westside High School, where he is fully included. He runs track and plays in the school band, and is part of “Sparklers” Cheer and the unified bowling team. Walt is a staunch advocate for inclusion. His contributions to his family and community, his zest for life, and compassion for others make him beloved wherever her goes. “I love modeling in GLOBAL’s fashion show in Denver, showing the world what people with Down syndrome can do. Together, we are changing the world,” says Walt. During the fashion show, 20 brilliant and beautiful models with Down syndrome will rock the runway, including GLOBAL’s Ambassador.

“At GLOBAL we are taking COVID-19 very seriously, and we are closely monitoring and following government guidelines to determine the format of the fashion show,” says Michelle Sie Whitten, GLOBAL President and CEO. “As of now, we are planning a smaller in-person event and a larger virtual component that we hope will be every bit as magical and inspiring.”

In response to the COVID-19 pandemic, GLOBAL has been a leader for the Down syndrome community – creating important resources like the Down syndrome/COVID-19 Q&A and supporting legislation that prohibits discrimination so that people with Down syndrome and other disabilities can receive COVID-19 medical care in the event there is medical care rationing. GLOBAL also provided COVID-19 Emergency Relief Global Grants to over 100 individuals with Down syndrome and their families needing food, medicine, and shelter, and most recently GLOBAL provided over 31,000 pieces of personal protective equipment (PPE) to people with intellectual and developmental disabilities who are wards of the state in Colorado.

Proceeds from GLOBAL’s Be Beautiful Be Yourself Fashion Show underwrite GLOBAL’s direct help to the community, excellent quality health care to over 2,000 patients with Down syndrome from 28 states and 10 countries, and transformative research focused on the relationship between Down syndrome and Alzheimer’s disease, solid tumors, autoimmune disorders and more.

To support GLOBAL’s work, please consider a donation.

To learn more, visit: www.bebeautifulbeyourself.org

To buy tickets, visit: https://bebeautifulbeyourself.org/buy-tickets/

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

Lifespan of Resources will have a National and International Impact

Press Contacts:
GLOBAL: Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
NDSC: Rhonda Rice | rhonda@ndsccenter.org | C: (678) 770-6641
IMDSA: Brandy Hellard | bhellard@imdsa.org | C: (513) 571-4186

DENVER, ATLANTA, Stow MA. May 07, 2020– Today, Global Down Syndrome Foundation (GLOBAL), the National Down Syndrome Congress (NDSC), and the International Mosaic Down Syndrome Association (IMDSA) have announced that they will expand existing collaborations aimed at consolidating and creating Down syndrome resources across the lifespan for families.

The three national organizations will contribute funding, national and international distribution, and coordinated annual staffing associated with the Prenatal Testing & Down Syndrome Information pamphlet, the NDSC Annual Convention Global Down Syndrome Research Roundtable, the IMDSA Research & Retreat conference, and the Global Medical Care Guidelines for Adults with Down Syndrome.

“Our organizations have been collaborating for years on these important print and conference resources,” says Michelle Sie Whitten, President and CEO of GLOBAL. “To be able to make our existing collaborative resources available for free, in different modalities, and in many different languages, will have a wonderful national and international impact.”

“NDSC is proud to help support numerous Down syndrome initiatives and organizations that help our self-advocates and families,” says David Tolleson, Executive Director of NDSC. “To have a strategic plan to link our existing collaborations – from prenatal to adult care – is so important for our self-advocates and families dealing with issues across the lifespan.”

“I so appreciate this opportunity to ensure that people with mosaic Down syndrome, and the issues they face at various stages of life, will be included in future NDSC-GLOBAL national research and medical care roundtables,” said Brandy Hellard, President of IMDSA. “We are excited to help distribute the prenatal and adult guidelines at our IMDSA Research & Retreat conference and to dovetail our research to support future iterations of the guidelines.”

Expanding Collaborations:

• Prenatal Testing & Down Syndrome Information pamphlet: This resource is a result of nationwide research that included input from 400 pregnant women and over 400 clinicians working with pregnant women. It is available for free in English, Spanish & Icelandic and will expand to several other languages in the next two years. Based on feedback from genetic counselors, the additional languages will include Arabic, Nepalese, Bengalese, French, and Greek.
• NDSC Annual Convention Global Down Syndrome Research Roundtable: This resource attracts between 400-500 attendees each year. The collaboration will expand to have a virtual component that can reach more attendees and will include streams on mosaicism, autism, and other important but small sub-populations.
• IMDSA Research & Retreat conference: This resource is an annual conference attracting attendees from all over the world each year. The collaboration will expand to have a virtual component that can reach more attendees and will also have a sub-focus of supporting the Global Medical Care Guidelines for Adults with Down Syndrome.
• Global Medical Care Guidelines for Adults with Down Syndrome: This resource will be published after four years of work incorporating eleven authors who are the lead clinicians serving adults with Down syndrome across the United States. The collaboration will include joint professional surveys and concerted support for guidelines questions that have little or no research today.

To access the resource, families, friends and professionals can visit the websites of GLOBAL, NDSC, and IMDSA.

Global Down Syndrome Foundation (GLOBAL)
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome.

National Down Syndrome Congress (NDSC)
The National Down Syndrome Congress (NDSC) is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome.

International Mosaic Down Syndrome (IMDSA)
International Mosaic Down Syndrome Association (IMDSA) is designed to provide support, information and research to any family, individual or professional whose life has been affected by mosaic Down syndrome.

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Global grants fund a total of 80 jobs for people with Down syndrome in the US and Peru

At DSAIA Leadership Conference; Keynote speaker Zack Gottsagen and Global President & CEO Michelle Sie Whitten with awardees (L-R): Down Syndrome Association of Greater St. Louis, Down Syndrome of Louisville, Down Syndrome Association of Connecticut, Down Syndrome Association of West Michigan, Down Syndrome Association of Delaware (Not Pictured: Down Syndrome Association of Wisconsin, Down Syndrome Network Arizona, Sociedad Peruana de Sindrome Down)

Press Contacts:
Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832

Orlando, FL and DENVER, CO February 28, 2020 – Today, Global Down Syndrome Foundation (Global) announced eight new Global Self-Advocate Employment Initiative Grant winners at the national Down Syndrome Affiliates in Action (DSAIA) Annual Leadership Conference.

“We started this grant program in 2016 after attending a DSAIA conference and realized that many Down syndrome organizations cannot afford to employ people with the condition despite advocating for other companies to do so,” said Michelle Sie Whitten, President and CEO of Global. “To address that, we worked with our members on this grant program and we are proud to have supported 80 self-advocates jobs from 20 states and one in Peru! I’m so proud of our team and our members for making this all a reality in such a short time.”

The 2020 winners are: Down Syndrome Association of Connecticut, Down Syndrome Association of Delaware, Down Syndrome Association of Greater St. Louis, Down Syndrome Association of West Michigan, Down Syndrome Association of Wisconsin, Down Syndrome Network (AZ), Down Syndrome of Louisville, and Sociedad Peruana de Sindrome Down (Peru). This year’s Global Self-Advocate Employment Initiative Grants will underwrite self-advocate volunteers transitioning to paid contractors or staff, expansion of hours for self-advocate staff, work-place training, and public speaking training.

Past winners appreciate that Global’s grants can be multi-year, and that many grants have led to leveraged funding.

“Our organization is dedicated to helping our adults with Down syndrome develop vocational and professional skills. We have been fortunate to earn more than one of Global’s transformative employment grants, allowing us to train, prepare, and hire self-advocates for employment especially in our hospital clinic,” says Lauren Camp Gates, Executive Director of Down Syndrome Association of Delaware.

Erin Suelmann, Executive Director of Down Syndrome Association of Greater St. Louis agrees, “Global has helped us expand our ‘Ready to Work Employment Initiative’ programs. In 2018, Global’s grant empowered us to hire an Employment Assistant Ambassador and now we have on-going funding for that position. This year we are so grateful for another grant to grow our staff and hire a Peer Trainer for Social Enterprise.”

2020 grant winners received their award certificates from Whitten and DSAIA conference keynote speaker, Zack Gottsagen. Gottsagen, who starred in the award-winning hit indie film, The Peanut Butter Falcon, is an example of a hardworking individual with Down syndrome excelling in his career. Whitten is an executive producer of The Peanut Butter Falcon and led Global Members in marketing initiatives to ensure the film’s distribution success.

“I wanted to act from the time I was three,” said Gottsagen. “My mom listened to me so I took acting lessons for years. Then two acting coaches wrote a film for me to star in and I won awards for my acting at SXSW and Palm Springs Film Festivals. I showed up, worked hard, got this big break, and presented at the Oscars. It is important that parents and organizations have high expectations and provide training to children and adults with Down syndrome.”

Global membership benefits include supporting life-saving and transformative initiatives, Global’s award-winning magazine Down Syndrome WorldTM, Down syndrome expert webinars, and two first-in-kind grant programs – Global Membership Educational Grants and Global Membership Self-Advocate Employment Initiative Grants. To become a Global Down Syndrome Foundation member or to learn more about member benefits, visit: https://www.globaldownsyndrome.org/become-a-member/.

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

ETC