Archive for the ‘In the News’ Category

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).

Rachel, Marian, and Caterina

Exclusive $25 Tickets Gives a Remarkable Opportunity to
Experience this Inspirational and Star-studded Celebration

Buy Tickets to Be Beautiful Be Yourself Fashion Show Here

 

Press Contacts:

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

 

DENVER, CO October 28, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced Multiplatinum Artist Rachel Platten, The Fray’s Isaac Slade, and The Ransom Notes will all perform at GLOBAL’s one-night only virtual Be Beautiful Be Yourself Fashion Show on Saturday, November 14, 2020. Platten will perform her iconic “Fight Song” and “Better Place,” while Slade will perform “How to Save a Life” in tribute to COVID-19 survivors with Down syndrome. The Ransom Notes will share their wonderful Folk-Americana-Bluegrass music all the way from Nashville.

For the first time ever, GLOBAL is offering tickets at only $25 that will provide an extraordinary opportunity for people from across the U.S. and the world to attend this award-winning, inspirational, and star-studded event.

An impressive list of over thirty celebrities will be supporting GLOBAL’s annual fundraiser including Music Legend Quincy Jones, supermodel Beverly Johnson, model Madeline Stuart, award-winning actors and brothers Matt Dillon and Kevin Dillon, award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, and Megan Bomgaars; motivational speaker Tim Harris, Denver Broncos Von Miller, Brandon McManus, Justin Simmons, Phillip Lindsay, and Jake Butt, reality show host Jeff Probst, Golfer Brad Hennefer, Buffalo Bills’ Harrison Phillips, R&B power couple Ronnie & Shamari DeVoe, and musician Sujeet Desai, among others already announced. This year’s Quincy Jones Exceptional Advocacy Awards will honor two powerful women: 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.

Celebrities will virtually escort 25 beautiful models from 8 states and 3 countries down the runway. Model and 2020 GLOBAL Ambassador Walt Snodgrass is excited and ready, “I can’t wait to share my moves. It is so fun to be in the GLOBAL fashion show. But GLOBAL is also important for my health, and the health of everyone with Down syndrome.”

Chairs Jill and Lou Rotella III could not agree more. “The Global Down Syndrome Foundation just published the first-ever evidence-based medical care guidelines for adults with Down syndrome. They are delivering for our community on so many levels and they need our help now more than ever. We hope others will step up and support GLOBAL during this difficult time.”

Be Beautiful Be Yourself Fashion Show will also pay loving tribute to DeOndra Dixon, the inspiration behind GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award, who tragically passed away this month.

“Quincy Jones himself introduced us to DeOndra as one of the most articulate, irrepressible, magnetic people he had ever met,” says Michelle Sie Whitten, GLOBAL’s President and CEO. “GLOBAL has lost our talented, intelligent, feisty, beautiful, kind, loving, caring, pure and giving heart, DeOndra Dixon. Our Down syndrome community has lost a beacon of hope, a true leader, and role model whose aim was to always help others.”

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.

For more info on Be Beautiful Be Yourself Fashion Show on Saturday, November 14, 2020 at 6:30pm MST:

The event itself will be hosted on ClickBid, a virtual event platform with live stream, auction and donation options. A virtual access code will be sent to ticket holders and can be used on multiple devices.

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


 

About Global Down Syndrome Foundation

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

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

Global President & CEO Michelle Sie Whitten on KOMO News Radio

March 22nd, 2019 by Global Down Syndrome Foundation

Global President & CEO Michelle Sie Whitten on KOMO News Radio

John C. McGinley on Hallmark Channel’s Home & Family

October 25th, 2018 by Global Down Syndrome Foundation

Debbie Matenopoulos and Cameron Mathison welcome actor John C. McGinley.


“I want to thank you again for your testimony and for your advocacy, which has been extraordinary and has really made an enormous difference in the lives of literally thousands and thousands of individuals and families.”
 
“There really aren’t many reasons why we shouldn’t see more focus on Down syndrome than we have in recent years so it’s our hope and expectation that that will happen.”

 
    – Chairman Tom Cole (R-OK)


“You could have easily taken care of your own child, … but what you’ve chosen to do is really extraordinary: to take this experience and to be responsible for thousands and thousands and thousands of youngsters who are out there. That really is in another element.”
 
“The key is the research and what you’re doing is exactly the right thing … Your advocacy and that of families and others out there will make a difference.”

 
    – Ranking Member Rosa DeLauro (D-CT)

PRESS RELEASE

FOR IMMEDIATE RELEASE
Ed Mullen | emullen@georgetowngroup.com | 202-329-4855
Anca Elena Call | acall@globaldownsyndrome.org | 720-320-3832

Global Down Syndrome Foundation Testifies at the FY2019 Public Witnesses Hearing and Thanks House Subcommittee on Labor, Health and Human Services, Education and Related Agencies

Testimony focuses on reversing two decades of decreased and flat funding and positive new language in the 2018 Omnibus Bill

WASHINGTON, D.C. – Thursday, April 26th – The Global Down Syndrome Foundation (Global) thanked Chairman Tom Cole (R-OK) and Ranking Member Rosa DeLauro (D-CT) for inviting its President and CEO, Michelle Sie Whitten, to testify at the House Subcommittee on Labor, Health and Human Services, and Education and Related Agencies FY2019 Public Witness Hearing. Whitten provided a five minute testimony on the importance of increased funding for Down syndrome research and highlighted the twenty year decline and flat funding for the condition.

Whitten testified, “For Global and the Down syndrome community, our hope is that this esteemed committee can help us to ensure that the National Institutes of Health (NIH) will take advantage of the generous $3 billion in new funding included in the FY2018 Consolidated Appropriations Act…In particular, we hope that the funding of research benefitting people with Down syndrome will increase significantly from FY2017 to FY2018 and then again from FY2018 to FY2019, and that the increase will be seen in both the current pipeline of Down syndrome research and the new trans-NIH Down syndrome research initiative.”

Last year, with support from Reps. McMorris Rodgers, Sessions, Bustos and Coffman, and under the leadership of Cole and DeLauro, the Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, which provides federal funding for the NIH, held the first ever hearing on current and future research funding priorities for people with Down syndrome where Global also testified and presented compelling Down syndrome research.

As a result of that historic hearing, in March of 2018, Congress included funding for the new trans-NIH initiative to study Down syndrome in the Fiscal Year 2018 Omnibus Appropriations legislation. The provision, supported by Global, directs the NIH Director to lead a groundbreaking new scientific initiative to study immune system dysregulation and trisomy 21, with the aim of yielding research discoveries to improve the health of individuals with Down syndrome and typical individuals at risk for Alzheimer’s disease, cancer, cardiovascular disease, and autism, among others.

The FY2019 Public Witness Hearing on Thursday, April 26th was held at the Rayburn Building on Capitol Hill on Thursday, April 26th and featured twenty-one important advocacy groups listed below:

American Alliance of Museums, Elder Justice Coalition, Institute for Higher Education Policy, Boys & Girls Clubs of Oklahoma County, Inc., Global Down Syndrome Foundation, American Association of Nurse Practitioners, Alzheimer’s Association and Alzheimer’s Impact Movement, The Christopher & Dana Reeve Foundation, Center for Key Populations at Community Health Center, Inc., National Association of State Long-Term Care Ombudsman Programs, Michigan Works! Association, National Association of County and City Health Officials, Alliance for Biosecurity, National AHEC Organization, Coalition for Health Funding, Susan Chacon, President, Association of Maternal & Child Health Programs, American Dental Association, National Indian Health Board, American Association of Colleges of Nursing, National Council for Community and Education Partnerships, Trust for America’s Health

For the most current, accurate information and resources associated with people with Down syndrome, visit www.globaldownsyndrome.org/facts.

About the 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. Supporting the research of hundreds of scientists around the world, and through our advocates, partners and affiliates including the Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome, Global is making an impact on the lives of people with Down syndrome today, and remains focused on finding solutions tomorrow. We are committed to helping people with Down syndrome realize their fullest potential and lead healthy and productive lives. To learn more, visitwww.globaldownsyndrome.org.

As the head of Global Down Syndrome Foundation and as the mother of a 14-year old with Down syndrome, I believe I speak on behalf of a large community when I say I am thrilled and deeply appreciative that Lucas Warren has been selected as the 2018 Gerber Spokesbaby! To be chosen from 140,000 other contestants is truly remarkable – all the more so because Lucas happens to have Down syndrome.

While the human and civil rights movement of the 1960s and 1970s have afforded us many gains, there is still widespread discrimination against people with Down syndrome (for example in schools and medical practices), primarily due to lack of education. To have Lucas be the Gerber Spokesbaby for the entire year is a huge step towards awareness and inclusion.

In the U.S. we can proudly point to ethnic and gender diversity, but we still have a ways to go in promoting the differently-abled. Sesame Street was perhaps first with a child in a wheelchair being featured. Today we can thank OshKosh, Target, Babies “R” Us, Old Navy, Kmart and other stores for highlighting the differently-abled, including models with Down syndrome in their advertisements.

The Gerber Baby choice is perhaps even more meaningful since the historic marketing emphasizes the “perfect baby.” An aspiration for what all parents presumably want – a baby that is beautiful, healthy, and happy. By choosing Lucas, I believe the message is that babies with Down syndrome are no different from typical babies and can be seen as adorably perfect.

Everyone at the Global office was bouncing off the walls today for this small, but important victory in awareness. We congratulate the Warren family and Gerber, and we look forward to supporting all of Lucas’ efforts throughout 2018 as “the” Gerber Spokesbaby.​


Fox 31 Gerber’s new ‘spokesbaby’ has Denver Down syndrome charity buzzing

Lucas Warren became the first Gerber Baby with Down Syndrome. And at a Denver charity, it couldn’t be more ecstatic.

WATCH NOW


Reuters In a first, Gerber names boy with Down syndrome ‘Spokesbaby’

An 18-month-old boy with Down syndrome has been named by baby food maker Gerber as its “Spokesbaby” for 2018, the company said on Wednesday, an action hailed by advocates for people with the genetic condition.

READ MORE

Global CALLS OUT NETFLIX for anti-disability,
anti-Down syndrome rhetoric

January 19th, 2018 by Global Down Syndrome Foundation

With the #Metoo movement in full swing and the 1st Anniversary of the Women’s March looming, it’s shocking to see Netflix promoting its newest stand-up show aptly called “Disgraceful.”   Netflix promotes the show by claiming its comedian “…gives voice to the sordid thoughts you’d never say out loud, with blunt musings on porn, parking lot power struggles, parenthood and more.”

Apparently sordid thoughts about the disabled and people with Down syndrome are fair game. In fact, the show’s anti-disability sketch was deemed so funny by Netflix that it is used in their trailer. 

At the Global Down Syndrome Foundation we are grateful for the freedoms we have in the US – including freedom of speech.  AND YET, we also believe there are words that we are free to use, but as a society choose not to use because they are so directly tied to violence against a vulnerable population.  I would argue the ‘R’ word is exactly such a word – witness Willowbrook, NY to Pueblo, CO today.  The best essay I have read on this subject is written by our board member and renowned actor, John. C. McGinley (after you read it you will have a “Captain My Captain” moment).

Sometimes it is hard to advocate.  I’m a working mom, I’m perpetually tired so I get it. But we can all take a moment to post, like, share, or petition.  And WHY NOT demand Netflix to:

  • Edit out the anti-disability and anti-Down syndrome rhetoric in the show?  
  • Immediately take the appalling sketch out of their trailer?
  • Issue an apology for failing to use humanity as the demarcation line for comedic depravity?

What we are asking for is NOT too much or too difficult.  There are lots of depraved topics that are funny (disclosure – I’m half NJ Italian) that don’t lend themselves to violence or oppression.  So, you can still get that cheap laugh and feel good about yourself. 

It’s time to call folks out. Seriously, we have nothing to lose. 

Michelle Sie Whitten, President and CEO, Global Down Syndrome Foundation

Read John C. McGinley’s essay, Spread the Word to End the Word

Read full article on The Mighty