Archive for the ‘Press Releases’ Category

GLOBAL Applauds Final Action on FY2022 Federal Spending Law that Includes $10 Million Increase for NIH Down Syndrome Research through the INCLUDE Initiative

March 16th, 2022 by Global Down Syndrome Foundation

GLOBAL Self-Advocates and Congressional Champions Key to this Victory

DENVER, CO – (March 16, 2022) This week, on March 15, 2022, President Biden signed into law the $1.5 trillion fiscal year 2022 omnibus federal spending bill which includes a $10 million increase in Down syndrome research funding at the National Institutes of Health (NIH) above last fiscal year’s funding level. The bill was passed by the U.S. House of Representatives and Senate the week before. Total funding for FY22 is approximately $115 million.

This significant increase in funding for Down syndrome research will specifically benefit the NIH’s Investigating Co-Occurring Conditions Across the Lifespan to Understand Down Syndrome (INCLUDE) Initiative, which is led by the NIH Office of the Director and was launched with help from Global Down Syndrome Foundation.

Global Down Syndrome Foundation (GLOBAL) and our nationwide network of self-advocates and family members 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.

The new funding provided by the spending law also includes a Congressional request that the NIH make new investments in addressing racial and health disparities for African Americans with Down syndrome, mosaic Down syndrome, the dual diagnosis of autism and Down syndrome, and metabolic dysregulation.

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.

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, led by the Office of the NIH Director with support from NIH leaders Drs. Francis Collins, Lawrence Tabak, Diana Bianchi, Gary Gibbons, and other institute directors such as Dr. Richard Hodes. The initiative has already 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.

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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 33 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 120 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).

Contact:

Anca Call
Global Down Syndrome Foundation
anca.consultant@globaldownsyndrome.org
(720) 320-3832

AWARD-WINNING ACTORS ZACK GOTTSAGEN & JAMIE BREWER JOIN GLOBAL FOR AN EPIC WORLD DOWN SYNDROME DAY VIRTUAL DANCE PARTY & PRIZE DRAWING

March 10th, 2022 by Global Down Syndrome Foundation

Celebrities & Attendees from Around the World Will Join GLOBAL On Friday, March 18th to Celebrate Delta Spirit’s “What’s Done Is Done” SXSW Film Festival Nomination

Denver, CO, Mar 10, 2022 (GLOBE NEWSWIRE) — Today, Global Down Syndrome Foundation (GLOBAL) announced it will host an EPIC World Down Syndrome Day Virtual Dance Party on Friday, March 18, 2022 at 6:30PM MT. Award-winning actors and GLOBAL Quincy Jones Exceptional Advocacy Awardees Zack Gottsagen and Jamie Brewer will be on-hand to introduce Delta Spirit’s new single, What’s Done is Done – the first music video featuring professional actors with Down syndrome accepted into the prestigious SXSW Film Festival.

Other celebrity attendees include Delta Spirit’s lead singer Matthew Logan Vasquez, super model, GLOBAL Quincy Jones Exceptional Advocacy Awardee, and activist Amanda Booth, TV & Radio Personality Kathie J, and filmmaker Michael Parks Randa.

A highlight of the evening will be a GLOBAL Prize Drawing. The winner will get a cameo appearance in Michael Parks Randa’s next music video. Additional prizes are $50 gift cards.

“GLOBAL’s work to elongate life and improve health outcomes is truly inspiring,” says Randa. “I’m honored to have Jamie and Zack star in my music video and to have GLOBAL as a trusted partner. I cannot wait to meet the person who wins the drawing and to dance the night away with a lot of cool people on March 18th.”

“We are excited that Michael and all our friends are ready to put on their dancing shoes and join us,” says Michelle Sie Whitten, President & CEO of GLOBAL. “It’s an opportunity to celebrate OUR day and to honor American Horror Story’s Jamie Brewer and The Peanut Butter Falcon’s Zack Gottsagen. We’ll also get to hear first-hand about Amanda and Matthew’s deep connections to the Down syndrome community. It’s going to be very special.” 

DJ Walt White and DJ Shane Beard (The Love DJ) will oversee the dance party music and help ensure everyone is “highlighted” in full screen and gets a chance to dance and shine.

You can Register, Honor a Loved One, Share Your Photos, or Learn More about the GLOBAL EPIC Dance Party here!

What’s Done Is Done is preceded by other music videos promoting inclusion of people with Down syndrome, including Natalie Merchant’s Wonder, J. Balvin’s Lo Que Dios Quiera, Sigur Rós’ Seven-g-englar, and Jason Crabb’s Love is Stronger.

World Down Syndrome Day is celebrated around the world on 3/21, a date that represents “3” copies of chromone “21,” which is a distinguishing characteristic of those with Down syndrome. 

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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 33 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 120 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).

Contact:

Anca Call
Global Down Syndrome Foundation
anca.consultant@globaldownsyndrome.org
(720) 320-3832

National Down Syndrome Organizations Launch Joint Effort To Change CMS Proposal Concerning Coverage For New Class Of Alzheimer’s Treatments

February 4th, 2022 by Global Down Syndrome Foundation

Atlanta, GA., Bismarck, ND., Burlington, MA., Denver, CO., Hoffman Estates, IL, NY, NY, Rockport, ME, Feb. 04, 2022 (GLOBE NEWSWIRE) — Down Syndrome Affiliates in Action (DSAIA), GiGi’s Playhouse Down Syndrome Achievement Centers, 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) have launched a coordinated effort to catalyze a community-wide response to the recent Centers for Medicare & Medicaid Services (CMS) proposal concerning coverage for monoclonal antibodies directed against amyloid for the treatment of Alzheimer’s disease.

Last summer, the FDA approved a new drug, aducanumab, one of the first treatments meant to address the cause of Alzheimer’s disease and the first in a new class of treatments. CMS is currently making decisions about coverage for this new class of treatments and has proposed coverage only for people in a specific new set of clinical trials. People with intellectual and developmental disabilities, including Down syndrome, cannot be included in those trials, discriminating now and casting doubt on future coverage. While research has not revealed the extent to which this class of drugs will ultimately benefit individuals with Down syndrome, we want to make sure the community will have every opportunity to access the best possible treatments now and in the future.

“This collaboration among national Down syndrome organizations is particularly important given how prevalent Alzheimer’s disease is in our community,” said a spokesperson for the group. “By working together, we’re able to bring the expertise of each organization together to mobilize self-advocates, families, caregivers, medical professionals and the general public to push for inclusion of individuals with Down syndrome in this critical process.”

Alzheimer’s disease is a critical issue for the Down syndrome community because having a third copy of chromosome 21 greatly increases the risk of developing the disease. People with Down syndrome represent the single largest group with early onset dementia due to Alzheimer’s disease, yet they have not been adequately included in Alzheimer’s research or clinical trials for treatments. The proposed decision by CMS only furthers this inequity.

Since most people with Down syndrome rely upon Medicare or Medicaid for health insurance, their only hope of accessing these potentially lifesaving but very expensive drugs – if their doctor recommends this course of treatment – would be to self-pay or have secondary insurance. Additionally, excluding people with Down syndrome from clinical trials will make it harder for physicians to have the information they need to care for our community.

This exclusion by CMS sets a dangerous precedent that will slow the development of these treatments and make it harder for physicians to make informed decisions related to courses of treatment for their patients with Down syndrome. CMS must abandon its current course and identify a different methodology that ensures that people with Down syndrome and other similarly situated disabilities will have meaningful access to current and future advancements in treatments for Alzheimer’s disease. Through concerted effort and collaboration with other agencies and stakeholders, we are confident CMS can ensure those treatments will be safe, effective and affordable for patients with Down syndrome.

CMS is accepting comments on their proposed action until February 9th, and the group of national Down syndrome organizations are collaborating to share a common message: CMS cannot exclude the Down syndrome community now because it is likely to restrict access in the future. More information, including instructions for submitting a comment to CMS, is available at www.ndss.org/cms-comment.

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About the Organizations

Down Syndrome Affiliates in Action (DSAIA)

DSAIA strives to support and advance the growth and capacity of local and regional Down syndrome associations.

GiGi’s Playhouse Down Syndrome Achievement Centers

The mission of GiGi’s Playhouse Down Syndrome Achievement Centers is to change the way the world views Down syndrome and to send a global message of acceptance for all.

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 National Down Syndrome Society is 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.

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Press Contacts

DSAIA:

Sarah Mulligan
sarah@dsaia.org
(701) 354-7255

GiGi’s Playhouse Down Syndrome Achievement Centers:
Emily Mondschein
emondschein@gigisplayhouse.org

GLOBAL:
Anca Elena Call
acall@globaldownsyndrome.org
(720) 320-3832

LuMind IDSC:
Kate O’Neill
koneill@lumindidsc.org
(508) 344-4932

NDSC:
Rhonda Rice
rhonda@ndsccenter.org
(678) 770-6641

NDSS:
Michelle Sagan
media@ndss.org
(301) 728-0447

NTG:
Matthew Janicki
janickimp@gmail.com
(518) 421-3520

Global Down Syndrome Foundation Announces David Tolleson as Senior Advisor Strategic Alliances

December 2nd, 2021 by Global Down Syndrome Foundation

Denver, Dec 02, 2021 (GLOBE NEWSWIRE) — Global Down Syndrome Foundation (GLOBAL), welcomes David Tolleson as Senior Advisor Strategic Alliances. David will oversee GLOBAL’s Membership Programs, the award-winning Down Syndrome WorldTM magazine, and multiple existing and new strategic alliances.

“We are excited to have David join our executive team,” says Michelle Sie Whitten, GLOBAL President & CEO. “GLOBAL has so many joint projects with the NDSC that he can seamlessly help us manage, and his thoughtful and kind leadership in the Down syndrome community will help us deliver on our mission to improve the lives of the amazing people with Down syndrome who we serve.”

Tolleson comes to GLOBAL with nearly two decades of experience as the Executive Director at the National Down Syndrome Congress (NDSC) where he oversaw the growth and quality of the NDSC Annual Convention, the Rural Outreach Program, the Sibling Toolkit, the Prenatal Testing Pamphlet collaboration with GLOBAL, and is a founding contributor to the NIH Down Syndrome Consortium among other initiatives.

“I am excited and honored to join Michelle and the GLOBAL team, and to be able to continue to support our Down syndrome community in a meaningful way,” says Tolleson. “Having worked closely with the GLOBAL team over the years, I am confident that my experience will help to build strategies to deliver GLOBAL’s important goals, strengthen our community engagement, and support self-advocates to live longer and healthier lives.”

 

 

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 33 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 World TM . GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world.

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

 

Contact:

Anca Call
Global Down Syndrome Foundation
anca.consultant@globaldownsyndrome.org
(720) 320-3832

An Updated Prenatal Testing Pamphlet About Down Syndrome for Pregnant Women and New Parents

November 24th, 2021 by Global Down Syndrome Foundation

National Down Syndrome Society joins Global Down Syndrome Foundation and the National Down Syndrome Congress to Support an Important National Resource

DENVER, ATLANTA & NEW YORK – November 24, 2021 – Global Down Syndrome Foundation (GLOBAL), National Down Syndrome Congress (NDSC), and National Down Syndrome Society (NDSS) are pleased to announce they have entered into a strategic collaboration to co-publish the Prenatal Testing & Information About Down Syndrome pamphlet (PTP), an important and free resource. This is the first resource for expectant parents that is supported by all three national Down syndrome advocacy organizations.

The PTP was created in 2012 by GLOBAL and NDSC and was informed by the first national survey of pregnant women, OBGYNs, OBGYN nurses and genetic counselors. It was also reviewed by Down syndrome and other medical professionals. The content includes information about which prenatal tests are definitive and which are not, what parents and families can expect, early milestones, and resources. The PTP is available in English, Spanish and Icelandic.

“We are so pleased that NDSS President & CEO Kandi Pickard and her team have agreed to join us in supporting the PTP,” says Michelle Sie Whitten, GLOBAL President & CEO. “Together we can do so much more – translation into many more languages, more conference representation, and distribution to medical offices, Down syndrome organizations, and families.”

Shauntel Neal-Howe, President of the Board of NDSC agreed, “This is a wonderful collaboration of national organizations and great step forward for the Down syndrome community. We look forward to working with both GLOBAL and NDSS on this very important initiative.”

“NDSS is working collaboratively with our colleagues to support the entire Down syndrome community,” says Kandi Pickard, President & CEO of NDSS. “We are excited to work with our friends at GLOBAL and NDSC. Hopefully this is just a start!”

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

To learn more about National Down Syndrome Congress, visit www.ndsccenter.org

To learn more about National Down Syndrome Society, visit www.ndss.org

Press Contacts      

Anca Call
Global Down Syndrome Foundation
c: (720) 320-3832

Rhonda Rice
National Down Syndrome Congress
c: (770) 604-9500

Michelle Sagan
National Down Syndrome Society
c: (301) 728-0447

GLOBAL President & CEO Michelle Sie Whitten to Receive Prestigious Award at Down Syndrome Association of Greater St. Louis 45th Anniversary Gala

November 18th, 2021 by Global Down Syndrome Foundation

BRENTWOOD, MO and DENVER, CO – November 18, 2021 – Today, Down Syndrome Association of Greater St. Louis (DSAGSL) announced that Global Down Syndrome Foundation’s President & CEO, Michelle Sie Whitten, will be honored with the organization’s Shining Star Award at their upcoming 45th Anniversary Gala.

The theme of the event is ”A Night With the Stars,” and it will celebrate DSAGSL’s 45 years of serving families and individuals with Down syndrome in the greater St. Louis area throughout every stage of life. The gala will include a presentation of awards to Michelle and four other pioneers of Down syndrome advocacy, a variety show, music, local food and drinks, an exciting auction, and other great surprises.

“DSAGSL is thrilled to be able to honor Michelle Sie Whitten and the Global Down Syndrome Foundation,” says Erin Suelmann, Executive Director, Down Syndrome Association of Greater St. Louis. “GLOBAL has been there for us with Education Grants, Employment Grants, COVID Emergency Relief, and of course their adult guidelines.”

“On behalf of GLOBAL and our affiliates, I am honored to receive this award from Erin Suelmann and our friends at the Down Syndrome Association of Greater St. Louis,” says Michelle. “The work they do makes such an impact locally and we are proud to partner with them nationally on our GLOBAL Medical Care Guidelines for Adults with Down Syndrome.

Virtual tickets are available for $25 and in-person tickets are $150. To register for the Down Syndrome Association of Greater St. Louis 45th Anniversary Gala, visit dsagsl.org/events/gala/

To learn more about the Down Syndrome Association of Greater St. Louis, visit https://dsagsl.org/

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

To learn more about becoming a GLOBAL member, visit https://www.globaldownsyndrome.org/global-membership/

 

 

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 33 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 Down Syndrome Association of Greater St. Louis

The mission of the Down Syndrome Association of Greater St. Louis (DSAGSL) is to serve, support, and celebrate the lives of individuals with Down syndrome and their families, through every stage of life. Our vision is for an inclusive community where all people with Down syndrome can achieve their full potential. DSAGSL serves nearly 2,000 individuals with Down syndrome and their families through Family Support programs, small steps, next steps, and steps to independence programs, employment programming, and Silver Steps programs. DSAGSL advocates, educates and celebrates with communities in St. Louis and surrounding areas, including across the river in Illinois and as far south as Cape Girardeau and Springfield, Missouri.

Press Contacts                                                                            

Anca Call                                                           Abigail Beckord Bosslet
acall@globaldownsyndrome.org                       abigail@dsagsl.org
c: (720) 320-3832                                              c: (314) 833-7560

The World’s Largest Fundraiser for People with Down Syndrome Delivers Powerful Message & Results

November 15th, 2021 by Global Down Syndrome Foundation

GLOBAL’s Be Beautiful Be Yourself Fashion Show Raised $1.9 million and attracted over 2,500 attendees from 40 states and 14 countries

DENVER – Nov. 14, 2021 – Last night, Global Down Syndrome Foundation (GLOBAL) raised over $1.9 million at their annual Be Beautiful Be Yourself Fashion Show, the world’s largest fundraiser for people Down syndrome. The event has raised a cumulative $24 million.

Held virtually on Saturday, November 13, 2021, the award-winning event attracted over 2,500 viewers from 40 states and 14 countries. The takeaway message was a powerful one – with appropriate funding and more medical centers, we can and will elongate life and improve health outcomes for our loved ones with Down syndrome.

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

Over thirty Hollywood and Sports Celebrities zoomed into the event which included 27 beautiful models, 4 honorees, a loving tribute to GLOBAL Ambassador DeOndra Dixon, and shouts outs to Music Legend Quincy Jones and GLOBAL’s generous sponsors.

The event was emceed by award-winning journalists Kyra Phillips and John Roberts and featured 2021 GLOBAL Ambassadors Archie and Sevy Eicher, and Quincy Jones Exceptional Advocacy Awardees, NFL Hall of Famer & San Francisco 49ers  General Manager John Lynch, and Peruvian public servant Bryan Russell Mujica.

Other notables included Music Legend Quincy Jones, supermodels Beverly Johnson and Amanda Booth, model Marián Ávila, actress and model Peyton List, actress Miranda May, award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, Megan Bomgaars and Grey’s Anatomy star Caterina Scorsone, award-winning TV host Jeff Probst, R&B power couple Ronnie & Shamari DeVoe, Denver Broncos Brandon McManus, Justin Simmons, and Sam Martin, Buffalo Bills Harrison Phillips, Colorado Rapids Kellyn Acosta, former Colorado Rockies Ryan Spilborghs and Cory Sullivan, TV anchors Tom Green and Kim Christiansen, golfer Brad Hennefer, inspirational speaker Tim Harris, and author and advocate Frank Stephens. Full celebrity line-up: HERE.

“GLOBAL’s Be Beautiful Be Yourself Fashion Show never fails to impress. Once again, Michelle and GLOBAL have outdone themselves. But it’s not only a fabulous evening, it also has a powerful message and highlights GLOBAL’s game-changing work,” said John C. McGinley, GLOBAL board member and father to Max, who happens to have Down syndrome.

“People with Down syndrome are still at high risk for COVID-19 so it was only right to hold our event virtually again this year. We are especially grateful for the unconditional support and the love from of our dedicated community, celebrities, partners, members, and our clinicians and scientists”, said Michelle Sie Whitten, GLOBAL’s President and CEO. “Tonight, thousands of us got to truly celebrate how we are making a tangible difference together. It was awe-inspiring!”

“It is such a great honor to receive GLOBAL’s Quincy Jones Exceptional Advocacy Award. It will empower me to continue to work hard for the rights of individuals with Down syndrome in Peru and all over the world,” said Bryan Russell Mujica.

A highlight of the evening was the world-premiere of Delta Spirit’s new single, “What’s Done is Done,” featuring actors Zack Gottsagen, star of the breakout film The Peanut Butter Falcon and Jamie Brewer, award winning actress from American Horror Story. This is the first music video to star people with Down syndrome.

GRAMMY® Award-winning artist, songwriter, actress, author, and philanthropist Sara Bareilles wowed the audience with her iconic hits “Brave” and “I Choose You.” She also shared the personal story of her uncle Brian, with whom she was very close to and who happened to have Down syndrome.

Matthew Morrison, Emmy, Tony, and Golden Globe nominated artist, and beloved Glee and Broadway star, performed live during the VIP reception and answered questions from self-advocates.

The Fashion Show also paid tribute to the late DeOndra Dixon, the beloved sister of Jamie Foxx who tragically passed away last year. GLOBAL continues to honor her memory through the DeOndra Dixon Down Syndrome Research Fund, which raises funds to address medical care and healthcare disparity outcomes for African Americans with Down syndrome.

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.

During the pandemic, GLOBAL provided COVID-19 GLOBAL Emergency Relief Grants to over 200 individuals with Down syndrome and their families, and delivered 30,000 pieces of PPE to those with intellectual disabilities living in group and host homes; the COVID-19 & Down Syndrome Resource, created in collaboration with a consortium of national organizations, was updated to include information on the Delta variant and boosters.

 

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 33 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).

Press Contacts                                                                            

Anca Call                                                          Ben Enyart
acall@globaldownsyndrome.org                      benyart@globaldownsyndrome.org
c: (720) 320-3832                                             c: (720) 548-5626

Global Down Syndrome Foundation Funding for Alzheimer’s Research Results in Milestone Clinical Trial for People with Down Syndrome

October 21st, 2021 by Global Down Syndrome Foundation

Principal Investigators Dr. Huntington Potter and Dr. Peter Pressman Receive NIH Five-Year Grant to Study Whether Leukine® is Safe & Effective in Improving Cognition in Young Adults with Down Syndrome

 

DENVER – Oct. 21, 2021 – Today, the Global Down Syndrome Foundation (GLOBAL) announced that their lead Alzheimer’s scientist and colleagues were awarded a $4.6 million, five-year grant by the National Institutes of Aging to study whether a potential Alzheimer’s disease treatment is safe and effective in improving cognition function in young adults with Down syndrome.

Huntington Potter, PhD, is a professor of neurology, Director of the University of Colorado Alzheimer’s and Cognition Center (ACC), and Director of Alzheimer’s research at the Linda Crnic Institute for Down Syndrome (Crnic Institute). AAC and Crnic Institute are GLOBAL Affiliates. Dr. Pressman is a behavioral neurologist and assistant professor of neurology.

“This is the first clinical trial in years to target cognition in people with Down syndrome,” said Dr. Potter. “We are breaking new ground in studying both Down syndrome and Alzheimer’s disease, and we hope that this therapy will greatly improve their quality of life. We are so grateful to our affiliate, the Global Down Syndrome Foundation, for making this all possible with their early investment in our clinical trial.”

In 2016, GLOBAL and the Alzheimer’s Association joined forces to fund $1 million for Dr. Potter’s Phase II clinical trial of the FDA-approved drug, Leukine®, to determine whether it is safe and can help slow or prevent the progression of Alzheimer’s in the general population. The NIH provided another $7.5 million to complete the trial work which may be complete as early as 2026.

“We are very proud of Dr. Potter, Dr. Pressman, and all our brilliant scientists at the Crnic Institute and the Alzheimer’s and Cognition Center,” said Michelle Sie Whitten, President & CEO of GLOBAL. “And we are grateful that they were able to build upon our promising results in the general population, and then be awarded this important research grant that could help our loved ones with Down syndrome.”

“People with Down syndrome have unfortunately been excluded from a number of previous clinical trials,” said Dr. Pressman. “I’m excited to be able to work alongside this underrepresented group of individuals.”

The grant provides funding to design and complete a clinical trial in adults with Down syndrome using sargramostim, which is a recombinant human granulocyte-macrophage colony-stimulating factor (GM-CSF). GM-CSF is used to help increase white blood cell production in some cases of medical care, including after bone marrow transplantation and after induction chemotherapy in older patients with acute myelogenous leukemia.

Previous studies by Dr. Potter and his colleagues have also found that sargramostim treatment is associated with cognitive improvements in leukemia patients. In another clinical trial, Dr. Potter and fellow researchers found that three weeks of sargramostim treatment was safe and well-tolerated in participants with mild-to-moderate Alzheimer’s disease. The treatment was associated with improvement in cognition and with reduced biomarkers of neurodegeneration.

This new study is focused on quality-of-life improvements for members of the Down syndrome community, who have cognitive challenges and are particularly vulnerable to developing Alzheimer’s disease. As they grow older, every person with Down syndrome develops the brain pathology associated with Alzheimer’s disease, often beginning during middle adulthood. It is estimated that over 50% will get the early onset of dementia associated with Alzheimer’s in their 40s and 50s. Thanks to improved medical care, people with Down syndrome are living longer. In 1983, a person with Down syndrome lived to be only 28 years old on average. Today, the average life expectancy of a person with Down syndrome is nearly 60 years and continuing to climb.

A multidisciplinary team at CU Anschutz Medical Campus will study the safety and tolerability of the treatment. “If there is any indication that it is unsafe or not tolerated, the full trial will be stopped,” said Dr. Potter. “Safety is central to the execution of this grant.”

The new trial builds on this previous work and on a laboratory study in which CU researchers, led by Md. Mahiuddin Ahmed, PhD, senior research instructor of neurology, and Dr. Potter, found that GM-CSF reverses cognitive impairment and brain pathology in a mouse model of Down syndrome.

 

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 33 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 the University of Colorado Alzheimer’s and Cognition Center

​The mission of the University of Colorado Alzheimer’s and Cognition Center (ACC) is to discover effective early diagnostics, preventions, treatments, and, ultimately, cures for Alzheimer’s disease and related neurodegenerative disorders. The ACC is located at the CU Anschutz Medical Campus and is part of the School of Medicine, Department of Neurology. Our center offers clinical care, clinical research, and translational research through a collaboration between the University of Colorado and the University of Colorado Health System. We emphasize both research and clinical care using a team approach, with laboratory research scientists and neurology clinicians, who are also faculty members and clinical researchers at the CU School of Medicine, all working collaboratively on the science and treatments of neurodegenerative diseases. Our center also connects with the community outside of the university with education and support programs, participating in community events, and working with community advisory boards.

About the Linda Crnic Institute for Down Syndrome

The Linda Crnic Institute for Down Syndrome is one of the only academic research centers 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 supports a thriving research program involving over 50 research teams across four campuses on the Colorado Front Range. To learn more, visit crnicinstitute.org and follow us on social media (Facebook & Twitter: @CrnicInstitute).

About the University of Colorado Anschutz Medical Campus

The University of Colorado Anschutz Medical Campus is a world-class medical destination at the forefront of transformative science, medicine, education and patient care. The campus encompasses the University of Colorado health professional schools, more than 60 centers and institutes, and two nationally ranked independent hospitals – UCHealth University of Colorado Hospital and Children’s Hospital Colorado – that treat more than two million adult and pediatric patients each year. Innovative, interconnected and highly collaborative, the University of Colorado Anschutz Medical Campus delivers life-changing treatments, patient care and professional training and conducts world-renowned research fueled by over $650 million in research grants. For more information, visit www.cuanschutz.edu.

 

Press Contacts                                                                          

Anca Call                                                                   Ben Enyart
acall@globaldownsyndrome.org                               benyart@globaldownsyndrome.org
c: (720) 320-3832                                                      c: (720) 548-5626

Grammy Award-Winner Sara Bareilles, Football Hall of Famer John Lynch, and an Impressive Roster of Celebrities to Take Part in GLOBAL’s 2021 Be Beautiful Be Yourself Fashion Show

October 14th, 2021 by Global Down Syndrome Foundation

Press Contacts:                                                                           

Anca Call                                                                   Ben Enyart
acall@globaldownsyndrome.org                               benyart@globaldownsyndrome.org
c: (720) 320-3832                                                      c: (720) 548-5626

DENVER – Oct. 14, 2021 – Today, the Global Down Syndrome Foundation (GLOBAL) announced GRAMMY® Award-winning artist, songwriter, actress, author, and philanthropist Sara Bareilles will perform at GLOBAL’s virtual Be Beautiful Be Yourself Fashion Show on Saturday, November 13, 2021. Bareilles will perform her iconic hits including “Brave” and “The Light,” and share her personal connection to our Down syndrome community.

Pro Football Hall of Fame inductee and current General Manager of the San Francisco 49ers John Lynch will receive the Quincy Jones Exceptional Advocacy Award alongside Peruvian advocate and politician Bryan Russell Mujica. Lynch will receive the award for his commitment to athletes who are differently-abled and for the college scholarships he’s provided to young athletes with Down syndrome and other intellectual and developmental disabilities.

GLOBAL is offering exclusive $25 tickets 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 celebrities will join GLOBAL’s guests, including Music Legend Quincy Jones, R&B couple Ronnie & Shamari DeVoe, Disney stars Debby Ryan and Miranda May, award-winning reality show host Jeff Probst, Grey’s Anatomy stars Caterina Scorsone and Eric Dane, award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, and Megan Bomgaars, golfer Brad Hennefer, supermodels Amanda Booth and Beverly Johnson, models Marián Ávila and Madeline Stuart, motivational speakers Tim Harris, Karen Gaffney and Frank Stephens, Denver Broncos Brandon McManus and Justin Simmons, Buffalo Bills’ Harrison Phillips, Colorado Rapids Kellyn Acosta, musician Sujeet Desai, and 9NEWS anchors Tom Green and Kim Christiansen.

Renowned journalists and anchors, Fox News correspondent John Roberts and ABC’s Kyra Phillips, will emcee the event. Twenty-six beautiful models with Down syndrome from eight states and three countries will be featured on the virtual runway. This year’s GLOBAL Ambassadors are Archie and Sevy Eicher, two siblings who were adopted from an orphanage in Bulgaria by loving parents, Lisa and Joey, and siblings, Ace and Radko. Archie is an up-and-coming fashion model who was most recently featured in Gap’s new teen line, and Sevy is an internationally recognized painter with a waiting list of over 8,000.

The Fashion Show will also pay tribute to DeOndra Dixon, the beloved sister of Jamie Foxx who tragically passed away last year. GLOBAL is honoring her memory through the DeOndra Dixon Down Syndrome Research Fund, which raises funds to address medical care and healthcare disparity outcomes for African-Americans with Down syndrome.

Despite the pandemic and a year of tragic loss within the Down syndrome community, GLOBAL has worked tirelessly to provide life-saving information and grants to the community. GLOBAL provided COVID-19 GLOBAL Emergency Relief Grants to over 200 individuals with Down syndrome and their families, and over 30,000 pieces of PPE are continuing to be delivered to those with intellectual disabilities living in group and host homes; the COVID-19 & Down Syndrome Resource, created in collaboration with a consortium of national organizations, was updated to include information on the Delta variant and boosters; and millions in NIH funding has been secured for Down syndrome research and medical care, including groundbreaking research for the Leukine® trial that has advanced to the next stage with positive results in patients with Alzheimer’s disease.

 

More info on Be Beautiful Be Yourself Fashion Show on Saturday, November 13, 2021, 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/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 33 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).

GLOBAL Applauds House Appropriations Subcommittee for Approving $15 Million Increase for NIH INCLUDE Initiative and Related Down Syndrome Research as Part of FY2022 Budget

July 13th, 2021 by Global Down Syndrome Foundation

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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