Archive for the ‘Press Releases’ Category

For Immediate Release:
Anca Elena Call | acall@globaldownsyndrome.org | C: (720) 320-3832

DENVER, CO – (July 13, 2021) Today, the House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies (Labor-HHS) approved their fiscal year 2022 funding bill which includes a $15 million funding increase for the National Institutes of Health’s Investigating Co-Occurring Conditions Across the Lifespan to Understand Down Syndrome (INCLUDE) initiative and related Down syndrome research.

Global Down Syndrome Foundation (GLOBAL) and our nationwide network of community advocates successfully advocated for the establishment of a trans-NIH Down syndrome research initiative in the fiscal year 2018 budget and have secured funding increases for the initiative in each year since its establishment.

GLOBAL is deeply grateful for the support and leadership of House Appropriations Committee Chair Rosa DeLauro (D-CT), Labor-HHS Subcommittee ranking member Tom Cole (R-OK), Rep. Lucille Roybal-Allard (D-CA), Rep. Jaime Herrera Beutler (R-WA), Assistant Speaker Katherine Clark (D-MA), Rep. Cheri Bustos (D-IL) and all the members of the committee who supported this year’s increase. The full House Appropriations Committee are planning to vote on the funding legislation this Thursday, July 15th, and it is likely to be considered by the House of Representatives by the end of July.

GLOBAL has led a multi-year, international advocacy campaign to build awareness among policymakers regarding unparalleled scientific opportunities related to the presence of three copies of chromosome 21 (instead of two), which causes Down syndrome. This leads to a radically different disease spectrum for people with Down syndrome, as these individuals are predisposed to or protected from major diseases that are the cause of death for over of 50% of Americans.

Thanks to GLOBAL’s leadership, a bipartisan, bicameral group in Congress included language in the fiscal year 2018 spending bill that asked the National Institutes of Health to launch a trans-NIH program led by the Office of the NIH Director to harness the power of multiple institutes to expand the science around Down syndrome and co-occurring conditions like cancer, diabetes, and Alzheimer’s disease.

The INCLUDE Initiative has been a resounding success, run out of the Office of the NIH Director with support from NIH Champions Drs. Francis Collins, Lawrence Tabak, Diana Bianchi, Gary Gibbons, and other institute directors such as Dr. Richard Hodes. The initiative has led to breakthrough and significant advances in our understanding of immune system dysregulation, new studies focused on the increased prevalence of Alzheimer’s disease among individuals with Down syndrome, and the creation of national Down syndrome Data Coordinating Center, all of which will dramatically improve the health and quality of life of individuals with Down syndrome as well as millions of individuals who do not have Down syndrome. Increased funding will help researchers pursue some of the most neglected areas of research and care such as health disparities for African Americans with Down syndrome, mosaic Down syndrome, those with the dual diagnosis of Down syndrome and autism, and new studies on metabolic research dysregulation.


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 medical care. GLOBAL has a membership of over 130 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 Down Syndrome WorldTM magazine. GLOBAL also organizes the annual AcceptAbility Gala, and 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).

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WITH A PERFORMANCE BY GRAMMY-NOMINATED MULTI-PLATINUM SINGER-SONGWRITER NATASHA BEDINGFIELD


DENVER, CO – (June 10, 2021) – Today, Global Down Syndrome Foundation announced its annual AcceptAbility Gala will take place virtually on Wednesday, July 21, 2021 from 7:00pm to 8:30pm ET. GLOBAL will present its prestigious Quincy Jones Exceptional Advocacy Award to Congresswoman Lucille Roybal-Allard (D-CA) and Congresswoman Jaime Herrera Beutler (R-WA) for their unwavering support for Down syndrome research and medical care, and honor GLOBAL Ambassador Caroline Cardenas.

Key Speakers will include Congresswoman Rosa DeLauro (D-CT), Congressman Tom Cole (R-OK), Congresswoman Cathy McMorris Rodgers (R-WA), and Congressman Pete Stauber (R-MN). Other key supports include: Senator Roy Blunt (R-MO), Delegate Eleanor Holmes Norton (D-DC), Congressman Pete Sessions (R-TX), Congresswoman Cheri Bustos (D-IL), Assistant Speaker Katherine Clark (D-MA), and Senator Chris Van Hollen (D-MD). See the full list of this year’s Gala Congressional Committee here.

Grammy-nominated, multi-platinum singer-songwriter Natasha Bedingfield will give an intimate performance, and the event will be capped off with an inspirational set by performances by unified dance troupe RhythmXpress and soloist Robert Wallop.

The Gala brings together policymakers from both sides of the aisle, key scientists from NIH, and the Down syndrome community. The community’s support for this inspiring event allows GLOBAL to protect people with Down syndrome from COVID-19; 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. With support from our champions, GLOBAL’s advocacy efforts on Capitol Hill has resulted in a quadrupling of the NIH Down syndrome research and medical care budget in the last four years, as well as outreach to over 14,000 families.

The Gala will kick off via a Live Zoom VIP Reception from 7:00pm – 7:30pm ET with a live performance from multi-platinum singer-songwriter Natasha Bedingfield and short Q&A including Champions in Congress. The VIP reception is available for VIP Ticketholders and Table Sponsors.

From 7:30pm – 8:30pm ET the entertaining, fast-moving virtual program will feature presentations from Congresswomen Rosa DeLauro (D-CT) and Cathy McMorris Rodgers (R-WA); Acceptance Speeches from Congresswomen Lucille Roybal-Allard (D-CA) and Jaime Herrera Beutler (R-WA); Keynote from Congressman Pete Stauber (R-MN); Ambassador Caroline Cardenas; Other Congressional Speakers with Self-advocates with Down syndrome; and Musical and Dance Performances.

Down syndrome is the leading cause of developmental delay in the U.S., yet it is often overlooked by the federal government. The Global Down Syndrome Foundation is the lead advocacy non-profit working with self-advocates, congressional champions, and the National Institutes of Health to advance Down syndrome research that will lead to elongation of life and improved quality of life.

For more information visit  https://www.globaldownsyndrome.org/2021-acceptability-gala/.


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 medical care. GLOBAL has a membership of over 150 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 Down Syndrome WorldTM magazine. 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).

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GLOBAL DOWN SYNDROME FOUNDATION ANNOUNCES 2021 QUINCY JONES EXCEPTIONAL ADVOCACY AWARD RECIPIENT AND INITIAL CELEBRITY LINEUP FOR THE 13TH ANNUAL BE BEAUTIFUL BE YOURSELF FASHION SHOW

Press Contact: Anca Call | acall@globaldownsyndrome.org | C: 720-320-3832

DENVER, MAY 27, 2021 – Today, Global Down Syndrome Foundation (GLOBAL) announced its Ambassadors and its initial celebrity lineup for the virtual Be Beautiful Be Yourself Fashion Show set for Saturday, November 13. The marquee event is the largest fundraiser for Down syndrome in the world, raising over $22 million to date for life-saving and transformative research and medical care. Models with Down syndrome, Hollywood celebrities, renowned athletes, and philanthropists from all over the world will join GLOBAL to be inspired and to raise funds for people with Down syndrome.

During the fashion show, 27 brilliant and beautiful models with Down syndrome will rock the runway. The event will honor GLOBAL Ambassadors Archie & Sevy Eicher. Archie and Sevy were born in Bulgaria and were adopted by loving parents Lisa and Joey. Archie is an active 17-year-old high school student and a famous model who was recently featured in Gap’s “Nxt Gen” and “Generation Good” campaigns. Sevy is twelve and an incredibly accomplished artist. Her paintings have a very long waiting list and her studio, Sandal Gap Studio has become a destination for artists with disabilities. Archie and Sevy are surrounded by a very loving family, including siblings Ace and Radko.

“We are so proud that Archie and Sevy are GLOBAL Ambassadors and that our family can support the amazing work of Global Down Syndrome Foundation,” says Lisa Eicher. “They still talk about being models in 2019 and what it was like to walk down that runway. And even virtually, this event is truly magical.”  

The fashion show will also feature 2021 Quincy Jones Exceptional Advocacy Award recipient Bryan Russell Mujica. Bryan made history in 2019 when declaring his candidacy for the Peruvian Congress. When he entered the race, he became the first person with Down syndrome in the world to run for public office. Bryan’s political endeavors are reflected in an upcoming documentary, “El Candidato (The Candidate),” which follows his journey on the campaign trail.

Confirmed celebrities for GLOBAL’s Be Beautiful Be Yourself Fashion Show include: award-winning actors John C. McGinley, Caterina Scorsone, and Eric Dane, award-winning reporters and TV anchors Kyra Phillips, John Roberts and Kim Christiansen; supermodel Amanda Booth; and professional sports stars Brandon McManus, Justin Simmons and Harrison Phillips. A full roster of celebrities will be announced in the coming weeks.

The fashion show will take place virtually this year. “People with Down syndrome are high risk for COVID-19, so we decided to err on the side of caution and hold the fashion show virtually this year,” says Michelle Sie Whitten, GLOBAL President and CEO. “We promise it will still be fast-paced, beautiful, inspiring, and informative. We lost many people to COVID last year so we deeply appreciate everyone’s continued understanding and support as we turn this corner together.”

Despite the pandemic, GLOBAL has delivered on many important initiatives:

Proceeds from the Be Beautiful Be Yourself Fashion Show support the important work of GLOBAL and GLOBAL’s affiliates, including a team of over 200 scientists working on breakthrough life-saving research at the Linda Crnic Institute for Down Syndrome and a dream team of medical professionals providing excellent medical care to over 2,000 patients from 28 states and 10 countries at the Anna and John J. Sie Center at Children’s Hospital Colorado.

To learn more, visit: www.bebeautifulbeyourself.org
To buy tickets, visit: https://bebeautifulbeyourself.org/2021-beautiful-fashion-show-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 medical care. GLOBAL has a membership of over 150 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 Down Syndrome WorldTM magazine. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).

 

People with Down Syndrome Set a GUINNESS WORLD RECORDS™ Title

April 9th, 2021 by Global Down Syndrome Foundation

Global Down Syndrome Foundation and Down Syndrome Association of Ontario show the world that there are no limits

CLICK HERE TO DOWNLOAD ASSETS OF THE GUINNESS WORLD RECORDS TITLE ATTEMPT.


DENVER, TORONTO – Friday, April 9, 2021 – Today, Global Down Syndrome Foundation (GLOBAL) and Down Syndrome Association of Ontario (DSAO) proudly announce that a dedicated group of people with Down syndrome have set the GUINNESS WORLD RECORDS title for most people doing the Raise the Roof dance move online simultaneously.

On March 21st, World Down Syndrome Day, and then again on March 27th, nearly 600 people from 27 countries participated in a round-the-world dance party that culminated in the record-setting feat. 

“Global Down Syndrome Foundation and Down Syndrome Association of Ontario are proud to be able to tell the world that a dedicated group of people with Down syndrome have set a GUINNESS WORLD RECORDS title,” says Michelle Sie Whitten, President & CEO of Global Down Syndrome Foundation. “This shows the world that children and adults with Down syndrome can and should have big aspirations that lead to extraordinary achievements.”

“We are grateful to Guinness World Records for giving us this opportunity,” says Domenic Gentilini, Chair of the Down Syndrome Association of Ontario. “It was actually quite a challenge with many requirements. It was also an opportunity during this devastating pandemic to virtually gather, celebrate, and be joyous. We are so proud of our attendees and, of course, our teams at DSAO and GLOBAL.”

Celebrity participants included Zack Gottsagen and Frank Stephens. Key sponsors included: Down Syndrome Connection of the Bay Area, Down Syndrome Association of Peel, Down Syndrome Association National Capital Region, Down Syndrome Association of York Region, Down Syndrome Association of Brantford, Waterloo Down Syndrome Association, Down Syndrome Association Simcoe County, Down Syndrome Association of Peterborough, Down Syndrome Guild of Greater Kansas City, and RE/MAX.

The 21-hour dance party was supported by The Sonic Crew and 21 DJs including Shane Beard, who happens to have Down syndrome. The dance party started in Australia then moved to Malaysia, United Arab Emirates, South Africa, England, Ireland, Canada and ended in the United States.

“I was happy to support GLOBAL, DSAO and of course win a GUINNESS WORLD RECORDS title!” says Zack Gottsagen, award-winning actor from The Peanut Butter Falcon. “It was great to see some friends, make new friends, and bust a move!”

“We participated as a family for all three attempts,” says Rachael DiCarlo. “We had a fabulous time and appreciated all the organization that went into it. When our little butterfly Laurel was born, we had no idea about all the milestones that would be met – and now we can add a GUINNESS WORLD RECORDS title to her amazing accomplishments!”

The official attempt was verified by Guinness World Records adjudicator, Andrew Glass. GLOBAL and DSAO set the record with 170 successful participants. The minimum to set the record was 100.


FOR MORE INFORMATION, PLEASE CONTACT:

Anca Elena Call
PR Consultant, GLOBAL
acall@globaldownsyndrome.org
720-320-3832

Guinness World Records
Press@GuinnessWorldRecords.com


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 medical care. GLOBAL has a membership of over 150 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 Down Syndrome WorldTM magazine. 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).

About DSAO

The Down Syndrome Association of Ontario (DSAO) is a charitable, non-profit organization composed of 19 local Down syndrome associations from across Ontario, Canada. Together, we coordinate the efforts to raise awareness, educate, and encourage the inclusion of people with Down syndrome and their families across Ontario. Our areas of focus include Health Care, Education, and Social Services.

About Guinness World Records

What’s the fastest game bird in Europe? This was the question that inspired the founding of Guinness World Records back in 1955. Starting with a single book published from a room above a gym, GWR has grown to become a global multi-media brand, with offices in London, New York, Miami, Beijing, Tokyo and Dubai. Today, we deliver world-class content, not just through Books, but via TV shows, Social Media and Live Events. Our in-house consultancy works closely with brands and businesses around the world to harness the power of record-breaking and deliver award-winning campaigns and business solutions. Our ultimate purpose is to inspire people - individuals, families, schools, groups, companies, communities and even entire countries – to read about, watch, listen to and participate in record-breaking. To join this record-breaking community – and find out the answer to that original question – visit guinnessworldrecords.com

PLYMOUTH, Minn., DENVER, BURLINGTON, Mass., ATLANTA, NEW YORK CITY, and ROCKPORT, Maine, March 2, 2021 /PRNewswire/ — Today, an important and timely COVID-19 and Down Syndrome Resource (“Resource”) was published by a consortium of national Down syndrome organizations: the Down Syndrome Medical Interest Group-USA (DSMIG-USA), Global Down Syndrome Foundation (GLOBAL), LuMind IDSC Foundation (LuMind IDSC), National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG).

The Resource builds upon the publication of the Q&A on COVID-19 & Down Syndrome and focuses on new and updated information specific to testing, vaccines, mental health, ways to stay safe, and advocacy in hospital settings and for appropriate care. It is available in both English and Spanish.

“It is important and useful to have tips on how to help individuals with Down syndrome prepare for the vaccine, especially if they have an aversion to needles,” says Debbie Shadrix, Georgia mom to Bradley Carlisle, a self-advocate who just received his second dose. “I also think everyone should read the sections on mental health and safety!”

In December of 2020, the Center for Disease Control and Prevention (“CDC”) officially added Down syndrome to the list of medical conditions that are considered “high-risk” for severe illness or death from COVID-19. This decision was made after studies found that adults with Down syndrome, particularly those age forty and older, are 4-5 times more likely to be hospitalized and 10 times more likely to die from complications associated with COVID-19.

Adding Down syndrome to the CDC list of high-risk conditions has had implications for vaccine prioritization and distribution, another topic which is discussed in detail in the new COVID-19 and Down Syndrome Resource

“This Resource is very helpful in explaining the vaccines and when the CDC recommends those with Down syndrome should get it,” says Dolores Zarate, founder of Down By The Border in Texas and mother of Zariah, who has Down syndrome. “It also makes it clear that the governors and states will ultimately decide who gets it when, and we will continue to advocate for individuals with disabilities to move up in priority.”

This Resource is informational only and not intended to provide medical advice or related advice. This Resource should NOT be considered a substitute for the advice of medical professionals or other professionals. Consult with your doctor or other healthcare professional(s) for medical advice. 

The following national and international organizations support the COVID-19 & Down Syndrome Resource: Down Syndrome Affiliates in Action, Exceptional Parenting Magazine, GiGi’s Playhouse, International Mosaic Down Syndrome Association, Jerome Lejeune Foundation, Matthew Foundation,T21 Research Society, and Down Syndrome Association of Ontario.

This Resource is copyrighted and cannot be duplicated on any website or edited without infringement of intellectual property. However, families, friends, and professionals are encouraged to visit any of the consortium member websites hyperlinked below to download a PDF or share the PDF by email, text, or social media.

About the National Consortium

Down Syndrome Medical Interest Group-USA (DSMIG-USA) 
DSMIG-USA is a group of health professionals committed to promoting the optimal health care and wellness of individuals with Down syndrome across the lifespan.

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

LuMind IDSC Foundation (LuMind IDSC)
The LuMind IDSC Foundation is a non-profit organization that accelerates Down syndrome research to increase availability of therapeutic, diagnostic, and medical care options and empowers families through education, connections, and support.

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

National Down Syndrome Society (NDSS) 
The mission of the National Down Syndrome Society is to be the leading human rights organization for all individuals with Down syndrome.

National Task Group of Intellectual Disabilities and Dementia Practices (NTG)
The NTG’s mission is to advocate for services and supports for people with intellectual disability and their families who are affected by Alzheimer’s disease and dementias.

 
Press Contacts
GLOBAL: Anca Elena Call | acall@globaldownsyndrome.org | c: (720) 320-3832
NDSC: Rhonda Rice | rhonda@ndsccenter.org | c: (678) 770-6641
NDSS: Michelle Sagan | msagan@ndss.org | c: (202) 848-5409
LuMind IDSC: Kate O’Neill | koneill@lumindidsc.org | c: (508)-344-4932
NTG: Matthew P. Janicki, Ph.D | janickimp@gmail.com | c: (518) 421-3520
DSMIG-USA: Emilie Perkins | eperkins@raybourn.com
 

PLYMOUTH, Minn., DENVER, BURLINGTON, Mass., ATLANTA, NEW YORK CITY, and ROCKPORT, Maine, 2 de marzo 2021   /PRNewswire/ — Hoy se ha publicado un importante y oportuno Recurso sobre la COVID-19 y el síndrome de Down (“Recurso”) por parte de un consorcio de organizaciones nacionales de síndrome de Down: el Grupo de Interés Médico del Síndrome de Down-Estados Unidos (DSMIG-Estados Unidos), la Fundación Global del Síndrome de Down (GLOBAL), la Fundación LuMind IDSC (LuMind IDSC), el Congreso Nacional del Síndrome de Down (NDSC), la Sociedad Nacional del Síndrome de Down (NDSS) y el Grupo de Trabajo Nacional sobre Prácticas de Discapacidad Intelectual y Demencia (NTG).

El recurso se basa en la publicación de “COVID & SD Preguntas y Respuestas” y se centra en información nueva y actualizada específica sobre las pruebas, las vacunas, la salud mental, las formas de mantenerse a sano, la defensa en los entornos hospitalarios y la atención adecuada. Esta disponible en ingles y español.

“Es importante y útil tener consejos sobre cómo ayudar a las personas con síndrome de Down a prepararse para la vacuna, especialmente si tienen aversión a las agujas,” dice Debbie Shadrix, de Georgia madre de Bradley Carlisle, que aboga por si mismo acaba de recibir su segunda dosis. “También creo que todo el mundo debería leer las secciones sobre salud mental y seguridad.”

En diciembre de 2020, los Centros para el Control y la Prevención de Enfermedades (“CDC”) añadieron oficialmente el síndrome de Down a la lista de condiciones médicas que se consideran de “alto riesgo” de enfermedad grave o muerte por COVID-19. Esta decisión se tomó después de que los estudios descubrieran que los adultos con síndrome de Down, especialmente los mayores de cuarenta años, tienen entre 4 y 5 veces más probabilidades de ser hospitalizados y 10 veces más probabilidades de morir por complicaciones asociadas a la COVID-19.

La inclusión del síndrome de Down en la lista de enfermedades de alto riesgo del CDC ha tenido implicaciones para la priorización y distribución de las vacunas, otro tema que se trata con gran detalle en el nuevo Recurso de COVID-19 y SD.

“Este recurso es muy útil en la explicación que dan sobre las vacunas y cuando el CDC recomiendan que las personas con síndrome de Down reciban la vacuna, ” dice Dolores Zarate, fundadora de Down By The Border en Tejas que tiene una hija, Zariah, que tiene síndrome de Down. “También deja claro que los gobernadores y los estados decidirán, en última instancia, quién lo recibe y cuándo, y seguiremos defendiendo que las personas con discapacidad suban de prioridad.”

Este recurso es meramente informativo y no pretende proporcionar asesoramiento médico o relacionado. Este recurso NO debe considerarse un sustituto del consejo de los profesionales médicos o de otros profesionales. Consulte con su médico o a otro(s) profesional(es) de la salud para obtener asesoramiento médico.

Cuenta con el apoyo adicional de las siguientes organizaciones nacionales e internacionales: Afiliados al Síndrome de Down en Acción, GiGi’s Playhouse, Asociación Internacional Mosaico de Síndrome de Down, Fundación Jerome Lejeune, Asociación de síndrome de Down de Ontario,Revista para padres excepcionales, Fundación Matthew, y T21RS.

Este recurso está protegido por derechos de autor y no puede ser duplicado en ningún sitio web ni editado sin infringir la propiedad intelectual. No obstante, se anima a las familias, los amigos y los profesionales a que visiten cualquiera de los sitios web de los miembros del consorcio a continuación con enlaces a para descargar un PDF o compartirlo por correo electrónico, texto o redes sociales.

Acerca del Consorcio Nacional

Grupo de Interés Médico del Síndrome de Down-Estados Unidos (DSMIG-Estados Unidos) 
DSMIG-Estados Unidos es un grupo de profesionales de la salud comprometidos con la promoción del cuidado óptimo de la salud y el bienestar de las personas con SD a lo largo de su vida.

La Fundación Global del Síndrome de Down (GLOBAL)  
La Fundación Global del Síndrome de Down es la organización mas grande sin fines de lucro en los Estados Unidos que trabaja para salvar vidas y mejorar drásticamente los resultados de salud con personas con síndrome de Down.

La Fundación LuMind IDSC (LuMind IDSC)  
La Fundación LuMind IDSC es un a organizaciones sin fines de lucro que acelera la investigación y capacita a las familias para mejorar la salud, la independencia y las oportunidades de las personas con síndrome de Down.

Congreso Nacional Síndrome de Down (NDSC)  
El Congreso Nacional Síndrome de Down es una organización sin fines de lucro dedicada dedicada a mejorar el mundo de las personas con síndrome de Down.

La Sociedad Nacional del Síndrome de Down (NDSS)  
La misión de la Sociedad Nacional del Síndrome de Down es ser la principal organización de derechos humanos para todas las personas con síndrome de Down.

El Grupo de Trabajo Nacional sobre Prácticas de Discapacidad Intelectual y Demencia (NTG)  
La misión del NTG’s es defender los servicios y apoyos para las personas con discapacidad intelectual y sus familias afectadas por la enfermedad de Alzheimer y la demencia.

 

Contactos de medios 
GLOBAL: Anca Elena Call | acall@globaldownsyndrome.org | c: (720) 320-3832
NDSC: Rhonda Rice | rhonda@ndsccenter.org | c: (678) 770-6641
NDSS: Michelle Sagan | msagan@ndss.org | c: (202) 848-5409
LuMind IDSC: Kate O’Neill | koneill@lumindidsc.org | c: (508)-344-4932
NTG: Matthew P. Janicki, Ph.D | janickimp@gmail.com | c: (518) 421-3520
DSMIG-USA: Emilie Perkins | eperkins@raybourn.com
 

Global Down Syndrome Foundation Appoints Two New Board Members

February 10th, 2021 by Global Down Syndrome Foundation

Press Contacts:

Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832

DENVER, CO – February 11, 2021 – Today, the Global Down Syndrome Foundation (GLOBAL) announced it has appointed to its board of directors: Philanthropist & Owner/Partner of the Colorado Rockies Charlie Monfort, and International Public Speaker & Self-advocate Frank Stephens. 

Charlie Monfort

Charlie Monfort is an owner, vice chairman, and general partner of the Colorado Rockies. In 1992, Charlie, Oren Benton, and Jerry McMorris were the original general partners and ownership group that brought the Major League Baseball club to Denver and the Colorado region. He has been one of the Colorado Rockies’ managing general partners since inception.

Charlie and his brother Dick Monfort have done extensive community outreach through their family-directed Monfort Family Foundation. In September 2004, the Monfort Family Foundation gifted $10 million to Children’s Hospital Colorado for the construction of a new medical facility in Aurora, CO. The oncology floor of the new hospital is named in memory of Rick Wilson, a cousin of the Monfort family. In addition, the family funded a display of artwork, photography, and Rockies memorabilia to enhance the seventh floor of the hospital. The foundation is a longtime provider of funding and endorsement for the Boys & Girls Clubs in Metro Denver and Weld County. In 2012, they matched dollar-for-dollar on fans’ collected contributions for Coloradoans devastated by summer wildfires.

Also active in higher education, the Monfort family supports the Monfort School of Business at the University of Northern Colorado and the Monfort Excellence Fund at Colorado State University; both impact students, faculty, and the Northern Colorado community through scholarships for exceptional students and support of outstanding faculty. Other organizations that have benefited from the Monfort family’s years of philanthropic work include CU Cancer Center, Craig Hospital, United Way, Denver Art Museum and Habitat for Humanity.

Charlie is a staunch advocate for the differently-abled and served on the board of Special Olympics for over a decade. He is also a member of the Advisory Board for the University of Utah and is an active supporter of the Denver Dream program.

Charlie was named president of Monfort International Sales Corporation in 1988, and under his guidance, it became one of the largest beef exporters in the world and the leading exporter of beef products to Asia. In 1990, Monfort became president of ConAgra Refrigerated Foods International, Inc., which consolidated Monfort International Sales Corporation with all of ConAgra’s international refrigerated foods companies. Charlie resigned from ConAgra in late 1997 in order to concentrate on his leadership role with the Rockies.

Charlie has a bachelor’s degree in marketing & business management from the University of Utah (1982) and served as president of Kappa Sigma Fraternity. He continues to make his home in Greeley, CO, and has four children: son Kenny, daughter Ciara, and twins – son Lucas and daughter Danica.

Frank Stephens

Frank Stephens is an active spokesman for the Global Down Syndrome Foundation and the recipient of GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award. He is also a long-time member of the Board of Directors of Special Olympics Virginia. An accomplished public speaker, Frank has been invited all over North America and Europe promoting inclusion for individuals with intellectual disabilities.

Frank is also an accomplished actor. As a member of his local theater group known as Artstream, Frank has acted in various original plays over the last ten years. Frank also had a feature role in the film Touched by Grace and has made occasional guest appearances on the Emmy Award winning A&E reality show, Born This Way.

Frank’s articles have been featured in publications like The New York Times, London Daily Mail, and The Huffington Post. He contributed to Amazon bestseller, Stand Up, which featured stories of outstanding young advocates.

In 2017, Frank testified on behalf of GLOBAL at the first U.S. Congressional hearing on the importance of Down syndrome research, which helped result in the first significant increase in Down syndrome funding from the National Institutes of Health in nearly 20 years. His famous line, “If you take one thing away from today, know this: I am a man with Down syndrome and my life is worth living,” received the first-ever standing ovation at a congressional hearing and his testimony on C-Span went viral receiving over 200M views.

Frank has been interviewed on behalf of GLOBAL and many other disability organizations by national outlets including BBC, Fox News, CNN, and Inside Edition.

“We are pleased to welcome both Frank and Charlie to the GLOBAL Board of Directors,” said Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation. “They are joining us at a pivotal moment when we need more passionate leaders to help us protect people with Down syndrome against COVID-19, support our individuals with Down syndrome and their families hit by the ensuing economic crisis, and deliver on our research, medical care, and research mission. We look forward to their contributions and are grateful they chose GLOBAL as a priority.”


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 medical care. GLOBAL has a membership of over 150 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 Down Syndrome WorldTM magazine. 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).

The unprecedented virtual event was an overwhelming success which raised $1.9 million for
life-saving and transformative funds for Down syndrome research and medical care

Press Contacts:

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

 

DENVER, CO – November 19, 2020– This weekend, the Global Down Syndrome Foundation (GLOBAL) went virtual for the first time ever and raised over $1.9 million. Now in its 12th year, GLOBAL’s Be Beautiful Be Yourself Fashion Show is the largest fundraiser for Down syndrome in the world and has raised a cumulative $22 million.

Held virtually on Saturday, November 14, the Be Beautiful Be Yourself Fashion Show was a tremendous success. 2020 GLOBAL Ambassador Walt Snodgrass; Music Legend Quincy Jones; supermodels Beverly Johnson and Amanda Booth; award-winning actors John C. McGinley, brothers Matt Dillon and Kevin Dillon, Jeff Probst, Eric Dane, Zack Gottsagen, Jamie Brewer, Megan Bomgaars, Kevin Quinn (appearance arranged by Gotham Artists); Denver Broncos Von Miller, Brandon McManus, Justin Simmons, Jake Butt; Golfer Brad Hennefer; R&B power couple Ronnie & Shamari DeVoe; award-winning journalists Kyra Phillips and John Roberts; musician Sujeet Desai and more, were among those who rocked the virtual runway, which featured <href=”https://bebeautifulbeyourself.org/2020-models/”>25 beautiful models from 8 states and 3 countries who were introduced by their celebrity escorts. The show’s virtual format provided an extraordinary opportunity for people from across the U.S., and the world, to tune-in and join this inspirational and star-studded event. Full list of celebrity line-up: HERE

“It was an honor to emcee the event this year, and to see how all the pieces came together so magically,” says John C. McGinley, who is a GLOBAL board member and international spokesperson, and father to Max, who has Down syndrome. “It truly was the virtual event of the year!”

“We are so grateful to John C. McGinley, our models, celebrities, and donors that helped make our first virtual event a success,” says Michelle Sie Whitten, GLOBAL’s President and CEO. “With COVID we have had such a tough year working to protect people with Down syndrome who are high risk from the virus, and to help families who have been crushed by the economic impact. Despite all that, GLOBAL was still able to deliver on publishing the first medical care guidelines for adults with Down syndrome, advocate for increased NIH research funding, and support over 2,000 patients with Down syndrome. Sadly, this year we also tragically lost our GLOBAL Ambassador DeOndra Dixon so we’re navigating a lot of loss.”

Later in the evening the legendary music icon Quincy Jones presented his namesake awards, the Quincy Jones Exceptional Advocacy Awards, to this year’s winners, award-winning actress and Grey’s Anatomy star Caterina Scorsone and Spanish model Marián Ávila.

“Modeling, walking a runway, and being featured in advertising campaigns is important to me,” says Marián Ávila, who has modeled in New York Fashion Week and has been profiled in international publications including Vanity Fair. “It makes me feel self-assured and happy. And it is a platform for diversity and equity for people with Down syndrome and all people. I am so honored to receive this award – GLOBAL truly allows the world to see us, hear us, and respect us.”

The show paid a loving tribute to the late DeOndra Dixon who is the inspiration behind GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award. DeOndra tragically passed away last month. Music legend Quincy Jones himself introduced GLOBAL to DeOndra as one of the most articulate, irrepressible, magnetic people he had ever met. GLOBAL and DeOndra’s family have set up the “DeOndra Dixon Down Syndrome Research Fund” to focus on the often-neglected population of African Americans with Down syndrome. Anna and John J. Sie are generously matching $100K for this important research. See full tribute: HERE

“It means so much to our family to see DeOndra’s legacy make a difference for GLOBAL and the Down syndrome community that she inspired,” says Mr. George Dixon, DeOndra’s father. “DeOndra was an angel and a star. I know she is looking down on us, loving on us and watching over us. She is our angel.”

“DeOndra’s fund is so important to the Down syndrome community, especially the African American community. It will give us opportunities to better understand and correct the health disparities for African Americans with Down syndrome,” says Beverly Johnson, a GLOBAL international spokesperson and aunt to Natalie Fuller, a GLOBAL model who happens to have Down syndrome.

Another highlight of the evening were the heartfelt performances honoring those in the Down syndrome community who have battled COVID-19. The Fray’s Isaac Slade gave an exclusive performance of “How to Save a Life,” and Multiplatinum Artist Rachel Platten performed her iconic “Fight Song” and “Better Place,” which left the audience on their feet from the comfort of their own homes. The Ransom Notes shared their wonderful Folk-Americana-Bluegrass music all the way from Nashville and had everyone clapping. To end the evening, Multi-platinum artist and actor Phillip Phillips performed a heartfelt tribute in honor of DeOndra Dixon with a beautiful rendition of “Gone, Gone, Gone.” Rachel Platten and Phillip Phillips’ appearances were arranged through Gotham Artists.

Lou III and Jill Rotella from Omaha chaired the 2020 event – GLOBAL’s first virtual Be Beautiful Be Yourself Fashion Show. Past event chairs include Kacey Bingham and Brittany Bowlen, Peter Kudla, Anna and John J. Sie, Sharon Magness Blake and Ernie Blake, Ricki Rest, Nancy Sevo and Michelle and Tom Whitten. Other notables in attendance included past Global Ambassadors Chase Turner Perry, Kate Winfield, Sam Levin, Sophia Kay Whitten, Louis Rotella IV, Marcus Sikora, and Clarissa Capuano; and past Q-Award winners Tim Harris, Megan Bomgaars, Zack Gottsagen, Karen Gaffney, Sujeet Desai, Brad Hennefer, Jamie Brewer, and Frank Stephens.

Proceeds from GLOBAL’s Be Beautiful Be Yourself Fashion Show help underwrite life-changing and life-saving research and medical care at GLOBAL’s affiliates – the Crnic Institute for Down Syndrome, CU Alzheimer’s and Cognition Center, and the Sie Center for Down Syndrome at Children’s Hospital Colorado, all at the University of Colorado Anschutz Medical Campus.

“We are proud of all the important work we’ve been able to accomplish this year, including receiving NIH grants to study COVID-19 and Down syndrome and launching a clinical trial that aims to cure autoimmune disorders in people with Down syndrome,” says Dr. Joaquin Espinosa, Executive Director of the Crnic Institute. “We couldn’t do any of this without GLOBAL’s support and events like our fashion show help underwrite our Crnic Grant Challenge Grants and important advocacy work.”

The fashion show would not be possible without the generosity of GLOBAL’s Leadership Circle, sponsors, Ambassadors, Q-Awardees, models, Down syndrome partner organizations, celebrities, self-advocates and families.

To continue the work and fight for the down syndrome community, GLOBAL created a Q&A on COVID-19/Down syndrome, provided over 140 families and 42 Down syndrome organizations with COVID-19 Emergency Relief Global Grants, and supported legislation that fights discrimination against those with disabilities during crisis triage care situations.


Missed the event? It’s not too late to get involved! See highlights from the show .

To learn more about the Be Beautiful Be Yourself Fashion Show or to donate, visit www.bebeautifulbeyourself.org

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

NIH Award Funds Data Coordinating Center for Down Syndrome Research

November 9th, 2020 by Global Down Syndrome Foundation

The new initiative will fuel collaboration and discovery about the biology of Down syndrome and its co-occurring medical conditions

Press Contacts:

Amanda Hilll Linda Crnic Institute for Down Syndrome | amanda.a.hill@cuanschutz.edu | C: 303.724.9907
Bobby Moulder Center for Data Driven Discovery in Biomedicine | moulderr@email.chop.edu | C: 484.258.8539

Hsiao-Ching Chou Sage Bionetworks | chou@sagebionetworks.org | C: 206.696.3663

 

DENVER, CO November 5, 2020 Scientists and data experts are joining forces to create the world’s first centralized platform for Down syndrome researchers to share, access, and analyze data. The goal of the new initiative, called the “Data Management and Portal for INCLUDE (DAPI) Project,” is to accelerate discoveries and advance medical care for individuals with Down syndrome. The National Institutes of Health (NIH) recently awarded a grant totaling $19.5M over five years to develop the center as part of the INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE).

The DAPI Project is co-led by Dr. Adam Resnick, Director of the Center for Data Driven Discovery for Biomedicine (D3b) at Children’s Hospital of Philadelphia, Dr. Joaquin Espinosa, Executive Director of the Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus, and Dr. Justin Guinney, Vice President of Computational Oncology at Sage Bionetworks. DAPI Project leaders will work closely with NIH INCLUDE Project staff to develop the center. This collaboration brings together strong expertise in Down syndrome research and open, data-driven science.

“We expect this new data center will be an impactful resource for the INCLUDE Project and the larger Down syndrome research community,” said Dr. Charlene Schramm, NIH Program Officer for the award. “The goal is to create a world-class portal for data sharing and analysis that will encourage innovative investigations into Down syndrome comorbidities across the lifespan.”

Dr. Melissa Parisi, one of the leaders of the NIH INCLUDE Project, added “The DAPI Project will combine data from existing research cohorts of individuals with Down syndrome with new cohorts. By building common data and shared analytic platforms, this project hopes to create a rich resource to help advance our understanding of these co-occurring conditions and support future therapeutic development.”

The INCLUDE Project is a trans-NIH initiative launched in 2018 to support research into conditions that affect individuals with Down syndrome and the general population. More than six million individuals living with Down syndrome have an increased risk of developing a wide range of medical conditions, such as certain autoimmune disorders and Alzheimer’s disease. At the same time, they are protected from some of the largest killers of the general population, including solid cancers and certain heart disease. Therefore, a key goal of the INCLUDE Project is to decode the underlying biology that alters these and many other co-occurring medical conditions in individuals with Down syndrome.

“Coordinated discovery efforts in this population not only have the potential to directly improve the lives of individuals with Down syndrome, but also to impact millions of other people affected by numerous related and co-occurring conditions,” said Dr. Espinosa of the Crnic Institute.

To enable these investigations, the mission of the DAPI Project is to create a world class platform for data sharing, data access, and integrative analysis in Down syndrome. The platform will empower scientists, physicians, and the community with tools to elicit evidence-based action in the laboratory, clinic, classroom, government, and society at-large.

“More and more, the scientific community is demonstrating the power of platforms to connect different communities with diverse areas of expertise and datasets to drive surprising discoveries and accelerated impact across a broad number of conditions in both children and adults,” said Dr. Resnick of D3b. “The DAPI Project will build on these efforts through the implementation of new technologies and platforms that will empower large-scale, diverse INCLUDE datasets on behalf of individuals with Down syndrome and other associated medical conditions and diseases.”

The DAPI Project is organized into three cores, roughly centered at each of the three partner organizations:

  • Data Portal Core.Led by Dr. Resnick at D3b, the Data Portal Core oversees the development of the web-based data portal, which will be the public-facing centralized platform for data sharing and analysis. Dr. Resnick and the team at D3b are recognized leaders in collaborative, data-driven science, with expertise in pediatric cancers and diseases and large-scale data visualization and analysis.
  • Data Management Core. Led by Dr. Guinney at Sage Bionetworks, the Data Management Core directs the overall data management practices for the DAPI Project, including protocols for data collection, governance, harmonization, processing, and sharing. Sage Bionetworks is a non-profit biomedical research organization devoted to responsible, open data-sharing practices, with broad expertise in computational and systems biology, as well as neurodegenerative diseases.
  • Administrative and Outreach Core.Led by Dr. Espinosa at the Crnic Institute, the Administrative and Outreach Core leads outreach, education, and stakeholder engagement efforts for the scientific and Down syndrome communities, as well as overall project management. Dr. Espinosa and the Crnic Institute team are leading Down syndrome researchers who also administer a large Down syndrome research program at the University of Colorado.

Additional experts from Centre Hospitalier Universitaire Sainte-Justine, Oregon Health and Science University, Oregon State University, Seven Bridges Genomics, and Vanderbilt University Medical Center will also collaborate with the DAPI Project team.

“We have created a truly exceptional team with diverse expertise to accomplish the mission of the DAPI Project,” said Dr. Guinney of Sage Bionetworks. “We are all excited and honored to work with the NIH, the Down syndrome research community, and each other on this new endeavor.”

DAPI Project operations began in early October, including efforts to identify existing Down syndrome cohorts and data already established by researchers, to engage in ‘listening tours’ to understand the needs of the researcher and Down syndrome communities, and to develop frameworks for data governance, standardization, and management. The DAPI Project team aims to release the first version of the public data portal in 2022, while continuing to refine and expand the platform thereafter.


About the Center for Data Driven Discovery in Biomedicine (D3b)

The Center for Data Driven Discovery in Biomedicine (D3b) is a translational biomedical research Center of Emphasis at the Children’s Hospital of Philadelphia Research Institute. D3b’s multi-disciplinary expertise is accelerating bench-to-bedside research on behalf of children diagnosed with cancer and other rare conditions. D3b’s seven collaborative units bring together experts in oncology and basic research, genomics, data science, bioinformatics, neurosurgery, and other research-related disciplines to discover breakthroughs for every child, every time, everywhere. To learn more about the D3b Center, visit https://d3b.center/.

About the Linda Crnic Institute for Down Syndrome

The Linda Crnic Institute for Down Syndrome is the first academic research center fully devoted to improving the lives of people with Down syndrome through advanced biomedical research, spanning from basic science to translational and clinical investigations. Founded through the generous support and partnership of the Global Down Syndrome Foundation, the Anna and John J. Sie Foundation, and the University of Colorado, the Crnic Institute administers a thriving Down syndrome research program involving over 50 research teams across four campuses on the Colorado Front Range. To learn more, visit www.crnicinstitute.org or follow us on Facebook and Twitter @CrnicInstitute.

About Sage Bionetworks

Sage Bionetworks is a nonprofit biomedical research and technology development organization that was founded in Seattle in 2009. Our focus is to develop and apply open practices to data-driven research for the advancement of human health. Our interdisciplinary team of scientists and engineers work together to provide

researchers access to technology tools and scientific approaches to share data, benchmark methods, and explore collective insights, all backed by Sage’s gold-standard governance protocols and commitment to user- centered design. Sage is a 501c3 and is supported through a portfolio of competitive research grants, commercial partnerships, and philanthropic contributions. To learn more, visit https://sagebionetworks.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).

NIH Award Funds Data Coordinating Center for Down Syndrome Research

November 5th, 2020 by Global Down Syndrome Foundation

The new initiative will fuel collaboration and discovery about the biology of Down syndrome and its co-occurring medical conditions

Denver, CO – November 5, 2020. Scientists and data experts are joining forces to create the world’s first centralized platform for Down syndrome researchers to share, access, and analyze data. The goal of the new initiative, called the “Data Management and Portal for INCLUDE (DAPI) Project,” is to accelerate discoveries and advance medical care for individuals with Down syndrome. The National Institutes of Health (NIH) recently awarded a grant totaling $19.5M over five years to develop the center as part of the INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE).

The DAPI Project is co-led by Dr. Adam Resnick, Director of the Center for Data Driven Discovery for Biomedicine (D3b) at Children’s Hospital of Philadelphia, Dr. Joaquin Espinosa, Executive Director of the Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus, and Dr. Justin Guinney, Vice President of Computational Oncology at Sage Bionetworks. DAPI Project leaders will work closely with NIH INCLUDE Project staff to develop the center. This collaboration brings together strong expertise in Down syndrome research and open, data-driven science.

“We expect this new data center will be an impactful resource for the INCLUDE Project and the larger Down syndrome research community,” said Dr. Charlene Schramm, NIH Program Officer for the award. “The goal is to create a world-class portal for data sharing and analysis that will encourage innovative investigations into Down syndrome comorbidities across the lifespan.”

Dr. Melissa Parisi, one of the leaders of the NIH INCLUDE Project, added “The DAPI Project will combine data from existing research cohorts of individuals with Down syndrome with new cohorts. By building common data and shared analytic platforms, this project hopes to create a rich resource to help advance our understanding of these co-occurring conditions and support future therapeutic development.”

The INCLUDE Project is a trans-NIH initiative launched in 2018 to support research into conditions that affect individuals with Down syndrome and the general population. More than six million individuals living with Down syndrome have an increased risk of developing a wide range of medical conditions, such as certain autoimmune disorders and Alzheimer’s disease. At the same time, they are protected from some of the largest killers of the general population, including solid cancers and certain heart disease. Therefore, a key goal of the INCLUDE Project is to decode the underlying biology that alters these and many other co-occurring medical conditions in individuals with Down syndrome.

“Coordinated discovery efforts in this population not only have the potential to directly improve the lives of individuals with Down syndrome, but also to impact millions of other people affected by numerous related and co-occurring conditions,” said Dr. Espinosa of the Crnic Institute.

To enable these investigations, the mission of the DAPI Project is to create a world class platform for data sharing, data access, and integrative analysis in Down syndrome. The platform will empower scientists, physicians, and the community with tools to elicit evidence-based action in the laboratory, clinic, classroom, government, and society at-large.

“More and more, the scientific community is demonstrating the power of platforms to connect different communities with diverse areas of expertise and datasets to drive surprising discoveries and accelerated impact across a broad number of conditions in both children and adults,” said Dr. Resnick of D3b. “The DAPI Project will build on these efforts through the implementation of new technologies and platforms that will empower large-scale, diverse INCLUDE datasets on behalf of individuals with Down syndrome and other associated medical conditions and diseases.”

The DAPI Project is organized into three cores, roughly centered at each of the three partner organizations:

Data Portal Core. Led by Dr. Resnick at D3b, the Data Portal Core oversees the development of the web-based data portal, which will be the public-facing centralized platform for data sharing and analysis. Dr. Resnick and the team at D3b are recognized leaders in collaborative, data-driven science, with expertise in pediatric cancers and diseases and large-scale data visualization and analysis.

Data Management Core. Led by Dr. Guinney at Sage Bionetworks, the Data Management Core directs the overall data management practices for the DAPI Project, including protocols for data collection, governance, harmonization, processing, and sharing. Sage Bionetworks is a non-profit biomedical research organization devoted to responsible, open data-sharing practices, with broad expertise in computational and systems biology, as well as neurodegenerative diseases.

Administrative and Outreach Core. Led by Dr. Espinosa at the Crnic Institute, the Administrative and Outreach Core leads outreach, education, and stakeholder engagement efforts for the scientific and Down syndrome communities, as well as overall project management. Dr. Espinosa and the Crnic Institute team are leading Down syndrome researchers who also administer a large Down syndrome research program at the University of Colorado.

Additional experts from Centre Hospitalier Universitaire Sainte-Justine, Oregon Health and Science University, Oregon State University, Seven Bridges Genomics, and Vanderbilt University Medical Center will also collaborate with the DAPI Project team.

“We have created a truly exceptional team with diverse expertise to accomplish the mission of the DAPI Project,” said Dr. Guinney of Sage Bionetworks. “We are all excited and honored to work with the NIH, the Down syndrome research community, and each other on this new endeavor.”

DAPI Project operations began in early October, including efforts to identify existing Down syndrome cohorts and data already established by researchers, to engage in ‘listening tours’ to understand the needs of the researcher and Down syndrome communities, and to develop frameworks for data governance, standardization, and management. The DAPI Project team aims to release the first version of the public data portal in 2022, while continuing to refine and expand the platform thereafter.


About the Center for Data Driven Discovery in Biomedicine (D3b)
The Center for Data Driven Discovery in Biomedicine (D3b) is a translational biomedical research Center of Emphasis at the Children’s Hospital of Philadelphia Research Institute. D3b’s multi-disciplinary expertise is accelerating bench-to-bedside research on behalf of children diagnosed with cancer and other rare conditions. D3b’s seven collaborative units bring together experts in oncology and basic research, genomics, data science, bioinformatics, neurosurgery, and other research-related disciplines to discover breakthroughs for every child, every time, everywhere. To learn more about the D3b Center, visit https://d3b.center.

About the Linda Crnic Institute for Down Syndrome
The Linda Crnic Institute for Down Syndrome is the first academic research center fully devoted to improving the lives of people with Down syndrome through advanced biomedical research, spanning from basic science to translational and clinical investigations. Founded through the generous support and partnership of the Global Down Syndrome Foundation, the Anna and John J. Sie Foundation, and the University of Colorado, the Crnic Institute administers a thriving Down syndrome research program involving over 50 research teams across four campuses on the Colorado Front Range. To learn more, visit www.crnicinstitute.org or follow us on Facebook and Twitter @CrnicInstitute.

About Sage Bionetworks
Sage Bionetworks is a nonprofit biomedical research and technology development organization that was founded in Seattle in 2009. Our focus is to develop and apply open practices to data-driven research for the advancement of human health. Our interdisciplinary team of scientists and engineers work together to provide researchers access to technology tools and scientific approaches to share data, benchmark methods, and explore collective insights, all backed by Sage’s gold-standard governance protocols and commitment to user-centered design. Sage is a 501c3 and is supported through a portfolio of competitive research grants, commercial partnerships, and philanthropic contributions. To learn more, visit https://sagebionetworks.org.


Press Contacts:
Amanda Hill, Linda Crnic Institute for Down Syndrome
Phone: 303.724.9907
Email: amanda.a.hill@cuanschutz.edu

Bobby Moulder, Center for Data Driven Discovery in Biomedicine
Phone: 484.258.8539
Email: moulderr@email.chop.edu

Hsiao-Ching Chou, Sage Bionetworks
Phone: 206.696.3663
Email: chou@sagebionetworks.org