Archive for the ‘Uncategorized’ Category

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 Callacall@globaldownsyndrome.org | C: (720) 320-3832
Rejena Carmichaelrcarmichael@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 learn more, visit: www.bebeautifulbeyourself.org

 


 

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).

Global Webinar Series – Spring 2020 Recap

July 10th, 2020 by Global Down Syndrome Foundation

SPRING 2020

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

What You Need to Know


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).


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


PDF Presentation: Download Government Funding for DS Research

 

Dr. Melissa Parisi

 


PDF Presentation: Download Scientific Research in the INCLUDE Era

 

Dr. Joaquín Espinosa

 


Important NoticeThe Global Down Syndrome Foundation’s employees and/or volunteers are NOT acting as your medical professional or attorney. Responses you receive via electronic mail, phone, or in any other manner DO NOT create or constitute a doctor-patient or attorney-client relationship between you  and the Global Down Syndrome Foundation (Global), or any employee of, or other person associated with, Global.

Information received from Global’s employees or volunteers, or from this website, should NOT be considered a substitute for the advice of a medical professional or lawyer. Globaldownsyndrome.org DOES NOT provide any medical or legal advice. You should consult with your own doctor or lawyer for medical or legal advice. This website is a general service that provides information over the internet. The information contained on this website is general information and should not be construed as medical advice to be applied to any specific factual situations.


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 Callacall@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 learn more, visit: bebeautifulbeyourself.org

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).

2020 Virtual Spring Performance | Be Beautiful Be Yourself Dance Program

June 12th, 2020 by Global Down Syndrome Foundation

GLOBAL Statement – Black Lives Matter Movement

June 5th, 2020 by Global Down Syndrome Foundation

Dear Families, Friends and Colleagues,

The Global Down Syndrome Foundation (GLOBAL) is deeply saddened by the senseless killing of George Floyd. We mourn for his family and every person who has been a victim of violent acts perpetrated in hateful discrimination.

Today we stand together with people from all over the world. We call for justice and demand systemic change that will protect us from racism, discrimination and brutality. Even beyond protection we demand real change that provides equity in research, medical care, education, the justice system, and every area that allows us freedom and the opportunity of good health, productivity, and happiness.

We maintain that if you believe in the inalienable rights for one group you must believe in them for all people. As Congresswoman Eleanor Holmes Norton said “You can’t be for women’s rights and not for disability rights. You can’t be for disability rights and not believe in racial equality. You can’t believe in racial equality and not in the LBGT community. The only true narrative is equity for all humankind.”

People with intellectual and developmental disabilities and their family members can relate to discrimination based on our own differences – and to a history that includes the Willowbrook State School and Aktion T4 murders.

At GLOBAL we condemn racism and discrimination in all forms. Black Lives Matter to us and to the world.

Wishing you health, safety and hope during these difficult but transformative times,
Michelle Sie Whitten and the GLOBAL Team

Make Your Voice Heard. We encourage you to help educate your communities by sharing information and resources on social media using the #BlackLivesMatter hashtag.

Lifespan of Resources will have a National and International Impact

Press Contacts:
GLOBAL: Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
NDSC: Rhonda Ricerhonda@ndsccenter.org | C: (678) 770-6641
IMDSA: Brandy Hellardbhellard@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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Support our Dare to Ride Team! 2020 VIRTUAL Courage Classic

May 1st, 2020 by Global Down Syndrome Foundation

GLOBAL’s Dare to Ride Team for the 2020 Courage Classic VIRTUAL bike tour on July 18-19! Courage Classic is an annual fundraiser for Children’s Hospital Colorado, and GLOBAL’s Dare to Ride Team designates its funds to the Anna and John J. Sie Center for Down Syndrome at the hospital.

COVID-19 UPDATE: After careful consideration, Children’s Hospital Colorado Foundation has decided to transition this year’s Courage Classic bicycle tour to a virtual celebration. While we were hopeful this year’s Courage Classic would take place as usual in Copper Mountain, we agree that this is the best option given the current public health landscape.

Please consider supporting our Dare to Ride Team in one or more of the following ways:

    1. Join our Virtual Team

  • Our Dare to Ride Team consists of self-advocates, family members, and community supporters who are passionate about supporting medical care for children with Down syndrome.
  • Fueled by their network of supporters, each rider contributes to our team goal of $50,000 through online peer-to-peer fundraising. There is no registration fee for 2020.
  • This year’s tour format broadens the possibilities of participation – You can ride, spin, run, hike, walk, and more while social distancing outside or staying in, all to support the Sie Center! Register today!
  • 2. Donate to the Team

  • Cheer on those who are going the distance with a gift of $10, $25, $50, or $100! Any amount, small or large, has a great impact on our community.
  • Visit our Dare to Ride Team webpage to ensure that all funds raised support the Sie Center.
  • Support a specific rider or the team as a whole
    • THANK YOU! The Sie Center is part of the GLOBAL family and provides the highest standard of care to pediatric patients with Down syndrome from 28 states and 10 countries.

    • Fastest growing pediatric medical care center for children with Down syndrome based at the top ten children’s hospital, Children’s Hospital Colorado.
    • Provides best clinical care and therapeutic intervention to over 1,800 patients.
    • Largest number of pediatric clinics of any Down syndrome facility in the U.S., including: Mental Wellness, Medical Care, Infant Care, Telemedicine, School Age/Education, Sleep, ENT, and Feeding and Swallowing.
    • Largest number of pediatric clinics of any Down syndrome facility in the U.S., including: Mental Wellness, Medical Care, Infant Care, Telemedicine, School Age/Education, Sleep, ENT, and Feeding and Swallowing.
    • Collaborative and ground-breaking research on co-occurring conditions in children with Down syndrome such as aspiration and dysphagia (swallowing difficulties).
    • Other specialties offered range from physical, speech and occupational therapy, to education advocacy.

    If you have any questions, please contact events@globaldownsyndrome.org or 720-548-5619.

    100% of the proceeds will go to the lifesaving and life-changing care at the Sie Center.

    View Photos

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 Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Callacall@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).

WDSD Redirect

February 5th, 2020 by Global Down Syndrome Foundation

ETC

Funding Increases for the National Institutes of Health (NIH) and Down Syndrome Research Lauded by Global Down Syndrome Foundation

Photo by Marleen Van den Neste

Press Contacts:
Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832

December 22, 2019, Denver, CO– On Friday, President Trump signed a $1.4 trillion spending package that will fund the government until September 2020 and averted a government shutdown. Earlier in the week, the package passed the House and Senate with victories and compromises on both sides of the aisle.

“Finally, we have secured the funds and resources for our military — our national security,” said Senator Richard Shelby (R-AL), Chairman of the Senate Appropriations Committee who also heads the appropriations subcommittee on defense. “This package includes a significant increase in defense funding and the largest pay raise in a decade for our men and women in uniform.”

Chairwoman of the House Appropriations Committee Nita Lowey was also pleased with the results, “I am particularly proud that House Democrats prevailed in securing historic investments For the People, including record funding levels for Head Start and lifesaving medical research at NIH, and in funding priorities vital to our shared security, like gun violence prevention research and election security grants to states.”

Included in the spending package was legislation providing a 7% increase or $2.6 billion more funding to the NIH for an annualized budget of $41.7 billion. Legislation also highlights a “minimum” of $60 million for Down syndrome research in FY2020 through NIH’s Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome (INCLUDE) trans-NIH project. This would bring total Down syndrome research funding up to $98 million for the year.

Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation, issued the following statement:

“Global thanks the Administration, our champions in Congress, and leadership at NIH who made Down syndrome research and medical care a priority resulting in the NIH INCLUDE project. It is important to note that this result reflects a decade of hard work and two decades of inequity in funding for our Down syndrome community.

The key turning point was the Labor, Health and Human Services, Education and Related Agencies House Appropriations Subcommittee hearing on Down syndrome research in October 2017. At the hearing, testimony from Global Ambassador, Frank Stephens, received a standing ovation, 100% bipartisan support, and over 150 million views on C-Span and other outlets.

This first ever hearing of its kind and testimonies were made possible by Congresswoman Cathy McMorris Rodgers, Chairwoman Rosa DeLauro, and Ranking Member Tom Cole with further support from Senators Roy Blunt, Patty Murray, and so many others from both sides of the aisle.

The FY2020 budget for NIH and Down syndrome research signals a clear message that the longevity and improved health outcomes of people with Down syndrome is important, and that their unique disease experience can also benefit others without Down syndrome. Global is proud and incredibly grateful to have worked with the Administration, NIH, and Congress to secure the funding for this research.”

The INCLUDE project focuses on diseases and conditions like Alzheimer’s, blood cancers, and autoimmune disorders that have a higher prevalence among individuals with an extra copy of chromosome 21 as well as conditions like solid tumor cancers that are rare among individuals with Down syndrome. The INCLUDE Steering Committee is chaired by Dr. Lawrence Tabak, NIH Principal Deputy Director in partnership with Dr. Diana Bianchi, Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and Dr. Gary Gibbons, Director, National Heart, Lung, and Blood Institute (NHLBI) as co-chairs.

To learn more about the NIH INCLUDE project, visit https://www.nih.gov/include-project/include-project-research-plan#leadership

To learn more about the Crnic Institute for Down Syndrome, visit https://medschool.cuanschutz.edu/linda-crnic-institute

To learn more about the Global Down Syndrome Foundation, visit www.globaldownsyndrome.org

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation is at the forefront of Research, Medical Care, Education, and Advocacy dedicated to significantly improving the lives of people with Down syndrome. Global supports the research of hundreds of scientists around the world through their advocates, partners and affiliates, including the Crnic Institute for Down Syndrome, the Rocky Mountain Alzheimer’s Disease Center, the Anna and John J. Sie Center for Down Syndrome, and a new pilot Adult Clinic. Global invites its supporters to celebrate over a decade of milestones in helping people with Down syndrome at their Be Beautiful Be Yourself Fashion Show. To learn more, please visit www.globaldownsyndrome.org and www.bebeautifulbeyourself.org.