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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).

A Loving Tribute to DeOndra Dixon

October 24th, 2020 by Global Down Syndrome Foundation

DeOndra Dixon Logo
 

GLOBAL’s 2020 virtual Be Beautiful Be Yourself Fashion Show ended with a loving tribute to GLOBAL Ambassador DeOndra Dixon and brought us all to tears. 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. DeOndra’s legacy will power us on. ALWAYS LOVED NEVER FORGOTTEN.

With the heaviest of hearts and full of sorrow, we are beyond sad that our beloved Global Ambassador DeOndra Dixon has passed. She is no doubt a true angel looking down on us, just as she was always an angel on earth.

The Global Down Syndrome Foundation’s highest honor, the Quincy Jones Exceptional Advocacy Award, was inspired by DeOndra and she was its first recipient. Quincy Jones himself introduced us to DeOndra as one of the most articulate, irrepressible, magnetic people he had ever met. DeOndra was brought into this world in a loving family who treated her like any other family member. They gave her the gifts of complete acceptance, confidence, and knowledge. They empowered her to graduate with a regular diploma from high school and to take life by storm, which, if you knew DeOndra, she absolutely did. Her parents, Annette and George Dixon, brother Jamie Foxx, sister Deidra Dixon, nieces Anelise and Corinne, dear friend Kim, and large extended family are beyond consolable, and we ask that you help us respect their privacy during this difficult time.

For Global, we have 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. She was a bright light in this world of ours.

DeOndra was our anchor. Her excitement for our Be Beautiful Be Yourself Fashion Show each year was palpable, and she often posted about her “secret moves” that she was practicing (and she did keep them secret right up until her stage call).

Over the years our fashion show became a reunion for Global’s “extended Down syndrome family” where DeOndra and her family, Quincy Jones, John C. McGinley, Amanda Booth, Beverly Johnson, Kyra Phillips & John Roberts, Ronnie & Shamari DeVoe, Matt Dillon, The Salah Foundation, Peter Kudla, Jules Haimovitz, Tomago Collins, Jay Mills, the Gold/Rest/Karsh/Perry, Vollbracht/Winfield, Capuano, Rotella, Sikora, Levin, Fonfara-LaRose, and Snodgrass families, our families, our tribes would come together over a weekend and celebrate life and people with Down syndrome.

Our extended family loves DeOndra deeply and unreservedly for who she is. Global and DeOndra’s family cannot imagine our fashion show without her, and so through our heartbreak and tears, we were able to honor her memory at our Be Beautiful Be Yourself Fashion Show with a loving tribute video and announce the “DeOndra Dixon Down Syndrome Research Fund” set up in conjunction with DeOndra’s family. The fund will focus on research to address the disparity of lifespan for African Americans with Down syndrome and will be matched up to $100,000 by a generous donation from Anna and John J. Sie.

Everyone at the Global Down Syndrome Foundation is in complete shock and full of grief. Please join us in honoring her and share your fondest memories of our beautiful and brilliant DeOndra Dixon. DeOndra is already sorely missed, but she will never be forgotten.

The Global Guideline is Published in the Print & Online Versions of JAMA,
Ensuring Clinicians Across the U.S. Have Access

Press Contacts:

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

 

 

October 20, 2020 Denver, CO – After four years of coordination, compilation, and rigorous assessment and writing, the Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome© (Global Guideline) is complete and available at no cost.

The authors include the clinical directors of eight of the largest adult Down syndrome medical centers in the country – Advocate Health Care in Chicago, University of Pittsburgh Medical Center, Kennedy Krieger Institute at Johns Hopkins School of Medicine, University of Kansas Medical Center, University of Arkansas for Medical Sciences, and Denver Health in conjunction with the Anschutz Medical Campus School of Medicine at University of Colorado.

The first-in-kind Global Guideline was peer reviewed, edited, and published in the Special Communication section of the print and online October 2020 issue of JAMA, the Journal of the American Medical Association.

“We are so pleased that the quality of our guideline rose to the occasion of being published in JAMA, and we are deeply grateful to our families and self-advocates for pushing us to work on this difficult project,” says Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation (GLOBAL). “Now we can focus on collaborating with other Down syndrome and disability organizations as well as medical institutions to ensure clinicians are following our Global Guideline and measuring outcomes.”

The Global Guideline is for clinicians and addresses nine medical areas: Behavioral Health, Dementia, Diabetes, Cardiovascular Disease, Obesity, Atlantoaxial Instability, Osteoporosis, Thyroid, and Celiac Disease.

It is made up of 14 recommendations and 4 statements of good practice. Some of the recommendations align with existing guidelines for individuals without Down syndrome, and two are markedly different. There were several questions associated with the recommendations that had no published research evidence, and therefore were answered based on the clinical expertise of the authors.

“It’s clear that the lack of Down syndrome research funding over the last 20 years has prevented us from easily or quickly creating these guidelines,” says Bryn Gelaro, LSW, Director of Adult Initiatives & Special Projects at GLOBAL. “We were fortunate to have expert authors and volunteers who helped identify important research needs that will bolster and better define our future Global Guideline recommendations.”

Author Amy Tsou, MD, from ECRI, an independent nonprofit and Evidence-based Practice Center, with support from Gelaro, helped spearhead the research methodology, which included PICO (Population/Intervention Comparison/Outcome) questions, the GRADE (Grading of Recommendations, Assessment, Development, and Evaluation) methodology, and focus groups from various stakeholders informed the final draft.

“I participated in the task force of over 40 self-advocates and family members that provided GLOBAL with the directive they needed to focus on adult care guidelines – even if it would be difficult and take a lot of time,” says Karen Gaffney, a nationally renowned athlete, GLOBAL Q-Awardee and spokesperson. “It was great to be able to participate in the week-long focus group of self-advocates and family members and see it all come together.”

“From the beginning, GLOBAL has been leading the way, empowering people with Down syndrome with improved care and health outcomes,” says mom Darlene Beals. “The Global Guideline is an important new resource for my 24-year-old son Alan, and I believe if anyone can get to the bottom of health disparities for African Americans with Down syndrome, it’s GLOBAL.”

Alan echoes his mom’s sentiments, “[I want to know] when to take thyroid medicine, once a day? How to live a healthy life in my own apartment and keep the apartment clean?” Alan is also concerned about doctors knowing how to pay Medicaid insurance.

While the Global Guideline is free of charge to any stakeholder, the copyright of the JAMA publication and of GLOBAL’s long-form publication prohibits the reproduction of the Global Guideline on any website or digital platform. However, printing and downloading for personal and clinical use is highly encouraged.

GLOBAL has support from over 50 local, national, and international Down syndrome organizations and several generous sponsors. By the end of 2021, GLOBAL plans to translate and distribute this transformative new resource into several languages, and to update and expand the Global Guideline every 6 years.

A webinar and Q&A with the renowned and expert authors will be held on Wednesday, October 21, 2020. To learn more or sign up, please click here.

The Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome Workgroup includes (in alphabetical order of lead and supporting authors):

  • Peter Bulova, MD: Associate Professor of Medicine, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania
  • George Capone, MD: Director, Down Syndrome Clinic & Research Center, Kennedy Krieger Institute, Associate Professor of Pediatrics, Johns Hopkins School of Medicine, Baltimore, Maryland
  • Brian Chicoine, MD: Medical Director, Advocate Medical Group Adult Down Syndrome Center, Park Ridge, Illinois
  • Terry Odell Harville, MD, PhD, D(ABMLI) D(ABHI): Professor of Pathology and Laboratory Services, and Internal Medicine, Department of Pathology and Laboratory Services, and Department of Internal Medicine, Division of Hematology, University of Arkansas for Medical Sciences, Little Rock, Arkansas
  • Barry A Martin, MD: Associate Professor of Clinical Practice, Division of General Internal Medicine, University of Colorado School of Medicine, Anschutz Medical Center, Aurora, Colorado
  • Dennis McGuire, LCSW, PhD: Private Practice, Evanston, Illinois
  • Kent D. McKelvey, MD: Associate Professor, Rockefeller Chair in Clinical Genetics, University of Arkansas for Medical Sciences, Little Rock, Arkansas
  • Moya Peterson, PhD, APRN, FNP-BC: Clinical Professor, University of Kansas Medical Center, Schools of Nursing and Medicine, Kansas City, Kansas
  • Amy Y Tsou, MD, MSc: Evidence-based Practice Center, ECRI Center for Clinical Excellence and Guidelines, Plymouth Meeting, Pennsylvania; Staff Neurologist, Division of Neurology, Michael J Crescenz Veterans Affairs Medical Center, Philadelphia, Pennsylvania
  • Carl Tyler, MD, MSc: Director of Developmental Disabilities – Practice-Based Research Network, and Professor, Family Medicine and Community Health, Cleveland Clinic Lerner College of Medicine, Case Western Reserve University School of Medicine, Cleveland, Ohio
  • Michelle Sie Whitten, MA: President & CEO, Global Down Syndrome Foundation, Denver, Colorado
  • Bryn Gelaro, MA, LSW: Director of Adult Initiatives, Global Down Syndrome Foundation, Denver, Colorado
  • Michael Wells, BS: Formerly Research Coordinator, Developmental Disabilities – Practice-Based Research Network, Cleveland, Ohio

About the 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 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 magazine Down Syndrome WorldTM. GLOBAL 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).

A Team Effort: Why This Award Isn’t Just For Me

October 13th, 2020 by Global Down Syndrome Foundation

Award

A Team Effort: Why This Award Isn’t Just For Me
By: Ashley Sparhawk, 2020 recipient of the Colleen Barrett Award for Administrative Excellence

Admin Award
Ashley Sparhawk, 2020 recipient of the Colleen Barrett
Award for Administrative Excellence

Thank you so much to Colleen Barrett for selecting me to be this year’s recipient. I am thrilled to be named the 2020 Denver Admin Awards recipient of the Colleen Barrett Award for Administrative Excellence. I was so humbled just to be nominated, so it is truly an honor to receive this prestigious award in your name.

Thank you Admin Awards for putting on such a fun and meaningful event! It’s been a tough year, but you all pulled off a great event. When Christine Fiero (2018 recipient of the Colleen Barrett Award for Administrative Excellence) brought the Admin Awards to my attention by nominating me last year, I knew I had to be involved (win or not) with this fantastic and unique organization for years to come. The Admin Awards is such a wonderful tribute to administrative professionals’ hard work and importance around the country.

I would like to recognize all the talented and hardworking admins nominated (especially the other Colleen Barrett finalists Bonnie Azevedo and Lori Lucero, plus my everyday partner at Global, Marisa, also a finalist in the Office Manager of the Year category). I’m honored to call you my peers.

Thank you everyone who nominated me! I owe this to you.

I want to dedicate this award to my boss, Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. I would not be here if it weren’t for you.

Michelle works tirelessly day in and day out to ensure that people with Down syndrome are given better lives through education, research, medical care and advocacy. It’s such an honor to work alongside you every day, to learn from you and to help transform the lives of people with Down syndrome.

Seven years ago, Michelle took a chance on me. Listening to and learning from Michelle over the years has been the most amazing and rewarding experience. She’s taught me how to be a strong woman in the workplace, a thoughtful colleague and how to always push for the best.

Michelle has this great gift of pinpointing the best qualities in her staff, maximizing on what they’re good at and elevating those talents to then help the greater good of our organization to ultimately to help individuals with Down syndrome.

I really wanted to make a difference in the world and I found that at the Global Down Syndrome Foundation. I love what I get to do every day. We work so hard, but we also have fun. And of course nothing beats that rewarding feeling of knowing that we are truly making a difference.

Thank you to the Admin Awards and Colleen Barrett for this honor. I will continue to strive to be a strong woman in the workplace, provide excellent customer service to my colleagues and constituents, and embody this award’s spirit.

Most of all thank you Michelle. I’m honored to call you my colleague, my friend, my role model.

Denver Metro Admin Awards LIVE! 2020 Finalist Tribute Video

Denver Metro Admin Awards recorded LIVE! 2020

Understanding the Impact of Immune Dysregulation in COVID-19 Patients with Down Syndrome May Lead to Tailored Prevention, Diagnosis and Treatment

Press Contacts:

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

 

September 25, Denver, CO – Researchers at the Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus (Crnic Institute) have been awarded three grants totaling $1 million, two from the National Institutes of Health (NIH) and one from Fast Grants, to understand how the hyper inflammatory state of the immune system in people with Down syndrome may result in more severe complications upon SARS-CoV-2 infection. Studying both people and mouse models, the aim is to develop tailored COVID-19 prevention, diagnosis, and treatment for individuals with Down syndrome.

Preliminary data suggests people with Down syndrome are more likely to be hospitalized and die at a younger age due to COVID-19 compared to the typical population. However, much more information is needed, and currently little is known about how COVID-19 affects individuals with Down syndrome.

“What our research has already shown is that people with Down syndrome have substantial dysregulation in their immune systems, which could impact not only their initial response to SARS-CoV-2 and their clinical outcome if they become ill with COVID-19, but also the development of potential long term side effects. Understanding each of these pieces is crucial for understanding the risks and developing proper medical care for people with Down syndrome who get COVID-19,” explains Dr. Joaquín Espinosa, Executive Director of the Crnic Institute.

The NIH and Fast Grants awards build upon the following important coalescing factors:

  1. The Crnic Institute’s breakthrough discovery that people with Down syndrome are
    affected by chronic autoinflammation.
  2. Patients with COVID-19 who have severe symptoms or die have hyperactive
    inflammation similar to that observed in people with Down syndrome.
  3. A class of FDA-approved drugs called “JAK-inhibitors” (such as Olumiant, Xeljanz, and
    Jakafi) are being evaluated world-wide to treat patients with COVID-19, and the Crnic Institute is testing Xeljanz to treat autoimmune and hyper inflammatory skin diseases in people with Down syndrome.

More specifically, these awards will allow Crnic Institute researchers to create an unprecedented body of knowledge by aggregating information and samples from individuals with Down syndrome diagnosed with COVID-19 through its Human Trisome ProjectTM data set and the National COVID Cohort Collaborative (N3C). In addition, Crnic Institute researchers will also test the ability of JAK inhibitors to normalize the hyper inflammatory state in a mouse model of Down syndrome.

“We are grateful to the NIH for identifying people with Down syndrome as a high risk population for COVID-19, and for acting quickly to fund research that could help save the lives of our children and adults from this terrible virus,” says Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation, an internationally renowned advocacy non-profit and an affiliate of the Crnic Institute. “Global, and the people with Down syndrome we serve, are also fortunate to have our congressional champions and our Crnic Institute scientists who are both brilliant and compassionate.”

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 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 the 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 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 magazine Down Syndrome WorldTM. GLOBAL 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).

Nathaniel Julius Statement

September 1st, 2020 by Global Down Syndrome Foundation

At the Global Down Syndrome Foundation (GLOBAL), we are simultaneously saddened and enraged by the tragic death of Nathaniel Julius, a 16-year-old with Down syndrome from Eldorado Park South Africa, who was shot and killed earlier this week during a police/gang-related shootout. Today, two officers involved in the shooting were arrested and charged with the murder of Nathaniel. We hope that the people responsible for this senseless killing are brought to justice. Our hearts go out to Nathaniel’s family, friends, and community during this difficult time.

*(As seen in GLOBAL’s social media on September, 1st). GLOBAL continues to follow the Nathaniel Julius case, as the now three suspected officers face the courts. We hope justice is served and our hearts go out to Nathaniel’s family and the community. See GLOBAL’s social media to keep up to date on this story.

Amidst the COVID-19 pandemic, GLOBAL helps provide economic support, shelter, food, and medical care to Down Syndrome Organizations and the Families they serve in 23 states and 4 countries

 

Press Contacts:

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

 

DENVER, CO July 23, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) will provide over $116,000 in COVID-19 Emergency Relief Global Grants (GLOBAL Grants). The grants support over 140 families and 42 Down syndrome organizations in 23 states and 4 countries (Albania, Honduras, Kosovo, and Uganda). GLOBAL Grants are providing food, medical care, shelter support, and other critical assistance to individuals with Down syndrome and their families facing crises during the COVID-19 pandemic.

“GLOBAL is struggling financially too but we decided to convert our educational grants to COVID-19 emergency grants because the need is so great right now, and we simply needed to tap our reserves and help our Down syndrome community,” says Michelle Sie Whitten, GLOBAL President and CEO. “We didn’t think we could fund the overwhelming number of family grants but with the incredible generosity of The Salah Foundation, a private invitation-only foundation, we were able to fund every single one. My staff were literally crying as they read the applications and we feel beyond blessed to provide some modest relief.”

Below are some examples of the GLOBAL Grants:

  • In St. Louis, a grandmother and her two grandchildren who she adopted, one of whom has Down syndrome, were left homeless for four months due to limited resources and social support during this time. The GLOBAL Grant was able to pay the rent to help the family get back on their feet.
  • In Albania, desperately-needed food packages were sent to 56 individuals with Down syndrome and their families that will help them get through the winter as jobs and government support have dried up.
  • In West Michigan, a father who is a disabled veteran and a mother who was temporarily laid off from her special education job due to COVID-19 could not pay their medical bills for their child with Down syndrome who recently had heart surgery. The GLOBAL Grants provided important interim relief for the family of six.
  • In Atlanta, the GLOBAL Grant helped keep the lights on at Adult Disability Medical Healthcare allowing the clinic to continue to provide critical and high-quality care virtually to their patients including care associated with COVID-19.

“Many of our donors have frozen their support, project grants have been postponed, and unfortunately, our government left the non-profit sector out of financial support packages,” says Emanuela Zaimi, Executive Director of Down Syndrome Albania Foundation. “Feeling hopeless and exhausted, we needed support and luckily GLOBAL stepped in and provided this amazingly generous grant, making a world of difference for 56 families of our community. We are very grateful to GLOBAL and to anyone who contributes to its mission, as this help reaches us too!”

Martine Hobson, Executive Director of Down Syndrome Association of Memphis & the Mid-South, says, “We’ve been GLOBAL members for years. To see how they’ve supported Down syndrome organizations on a national scale and now supporting us in this very personalized way is a testament to their leadership and dedication to every person with Down syndrome.

“I am so proud to be part of the GLOBAL team during this crisis,” says Ashley Sparhawk, GLOBAL Grants Program Manager. “It took a lot of time and work, but we have a wonderful GLOBAL Membership Advisory Board that helped and the generous Salah Foundation gift. At GLOBAL, we feel personally connected to all the professionals and families that are struggling through this difficult time and we are doing everything we can to lend a helping hand.”

The following 42 organizations received GLOBAL Grants:

1. ACDS

2. Adult Disability Medical Healthcare

3. Angel’s Center for Children with Special Needs
4. Chesapeake Down Syndrome Parent Group

5. Down Syndrome Albania Foundation

6. Down Syndrome Alliance of the Midlands

7. Down Syndrome Association for Families

8. Down Syndrome Association of Central Florida

9. Down Syndrome Association of Central New Jersey

10. Down Syndrome Association of Connecticut, Inc.

11. Down Syndrome Association of Delaware

12. Down Syndrome Association of Greater Cincinnati

13. Down Syndrome Association of Greater Richmond

14. Down Syndrome Association of Greater Winston-Salem

15. Down Syndrome Association of Memphis & the Mid-S.

16. Down Syndrome Association of Middle Tennessee

17. Down Syndrome Association of Minnesota

18. Down Syndrome Association of Northeast Indiana

19. Down Syndrome Association of the Valley

20. Down Syndrome Association of West Michigan

21. Down Syndrome Connection of the Bay Area

 

GLOBAL is working hard to protect and support people with Down syndrome during the pandemic. In addition to providing COVID-19 Emergency Relief Global Grants, GLOBAL is creating important resources like the Down syndrome/COVID-19 Q&A, and supporting legislation that prohibits discrimination so that people with Down syndrome and other disabilities can receive COVID-19 medical care in the event there is medical care rationing. Most recently, GLOBAL provided over 31,000 pieces of personal protective equipment (PPE) to people with intellectual and developmental disabilities who are wards of the state in Colorado.

To get the latest COVID-19 information and GLOBAL resources, visit www.globaldownsyndrome.org/covid-19

To learn more about GLOBAL’s membership program, visit www.globaldownsyndrome.org/become-a-member/

About Global Down Syndrome Foundation

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

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

Global Webinar Series – Spring 2020 Recap

July 10th, 2020 by Global Down Syndrome Foundation

SPRING 2020

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

What You Need to Know


Overview

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


Speakers

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

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


PDF Presentation: Download Government Funding for DS Research

Dr. Melissa Parisi


PDF Presentation: Download Scientific Research in the INCLUDE Era

Dr. Joaquín Espinosa


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

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

Press Contacts:

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

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

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

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

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

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

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

To 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 Recap of the 2020 NDSC Annual Convention From Your Couch

June 25th, 2020 by Global Down Syndrome Foundation


Engaging Roundtable Discussion

During GLOBAL’s Roundtable, speakers presented on COVID-19, breakthrough research, & more.
GLOBAL’s 2020 NDSC Research & Medical Care Roundtable Recap



Frank Stephens, GLOBAL Ambassador &
Q-Award winner,
The Importance of Research for People with Down Syndrome


Ed Janoff, MD, CU Professor of Medicine-Infectious Disease, Living Safely with Down Syndrome in the Age of COVID-19


Karen Gaffney, GLOBAL Q-Award winner,
Living Safely with Down Syndrome in the
Age of COVID-19


Kelly Sullivan, Boettcher Investigator & Assistant Professor, Crnic Institute, Immune System Dysregulation in Down syndrome


Mike Rafii, MD, PhD, Medical Director of the Alzheimer’s Therapeutic Research Institute, Alzheimer’s Disease in Down Syndrome



Joaquin Espinosa, Executive Director of the Crnic Institute, Immune modulation in Down syndrome and COVID-19


Mike Ybarra, MD, FAAEM, FACEP, PhRMA,
The Biopharmaceutical Industry’s Efforts
to Beat Coronavirus


Michelle Sie Whitten, MA, GLOBAL President & CEO, Our Response to COVID-19 and the “COVID 19 & Down Syndrome Q&A” Collaborative


Kent McKelvey, MD, Associate Professor in Medical Genetics & Family Medicine, Medical Guidelines For Adults with Down Syndrome


Melissa Parisi, MD, PhD, NICHD National Institutes of Health, DS-Connect Registry Manager, Promising Research at the NIH

 

GLOBAL Receives Prestigious Award

NDSC presented GLOBAL with the 2020 Pueschel-Tjossem award for the Global Medical Care Guidelines for Adults with Down Syndrome. GLOBAL President & CEO Michelle Sie Whitten and Bryn Gelaro, LSW, who have worked diligently over the past several years to accomplish this, accepted the award.

 


Zack Gottsagen Q&A

Zack Gottsagen was the keynote for the closing ceremony of the NDSC Annual Convention From Your Couch. Zack is an award-winning actor, best known for his breakout film The Peanut Butter Falcon, where he starred alongside Shia LaBeouf and Dakota Johnson. GLOBAL is proud to be an Executive Producer of the film.


Captivating Workshops

GLOBAL scientists, clinicians, Down syndrome experts, and self-advocates presented thoughtful workshops on topics and resources for adolescents and adults with Down syndrome, parents and caregivers, medical professionals, and more.

Promoting Strengths and Adaptive Resources in Persons with Down Syndrome
Dennis McGuire, PhD, Senior Consultant of Global Down Syndrome Foundation

Common Questions (And Answers!) about Health Conditions in Adolescents and Adults with Down Syndrome
Brian Chicoine, MD, Medical Director of Advocate Medical Group Adult Down Syndrome Center

Desensitization to Use of Medical Equipment and Procedure Related Distress
Lina Patel, MD, Director of Psychology at Sie Center for Down Syndrome

An Important New Resource: Global Medical Care Guidelines for Adults with Down Syndrome
Michelle Sie Whitten, President & CEO of Global Down Syndrome Foundation
Bryn Gelaro, LSW, Director of Adult Initiatives & Special Projects at Global Down Syndrome Foundation
Brian Chicoine, MD, Medical Director of Advocate Medical Group Adult Down Syndrome Center

Research & Medical Care Roundtable

For more information on any of our workshops or speakers, contact events@globaldownsyndrome.org