Archive for the ‘Media Advisory / Press 2017 and 2018’ Category

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

Press Contacts:

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

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

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

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

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

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

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

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

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

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

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

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

 

About Global Down Syndrome Foundation

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

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

 

GLOBAL’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 Call | acall@globaldownsyndrome.org | C: (720) 320-3832
Rejena Carmichael | rcarmichael@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).

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

Press Contacts:

Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832
Rejena Carmichael | rcarmichael@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 World^TM. 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).

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.

GLOBAL’s Virtual Be Beautiful Be Yourself Fashion Show attracts an impressive roster of celebrities with a NEW DATE – Saturday, November 14, 2020

Press Contacts:

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

DENVER, CO August 26, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced two powerful women who will receive this year’s Quincy Jones Exceptional Advocacy Awards: Grey’s Anatomy star Caterina Scorsone and Spanish model Marián Ávila. Celebrities are showing up in full force to support GLOBAL and honor the accomplished awardees.

The awards will be presented during GLOBAL’s annual Be Beautiful Be Yourself Fashion Show, the largest fundraiser for Down syndrome in the world, having raised over $20 million for life-changing research and medical care. Due to COVID-19 and restrictions on in-person gatherings, the event will be held virtually with a new date: Saturday, November 14, 2020.

Caterina Scorsone has starred in numerous television and film roles, portraying powerfully complex characters that have captured the hearts of audiences around the world. She is most well-known for playing the reckless, yet compelling “Dr. Amelia Shepherd” on ABC’s Grey’s Anatomy. Scorsone has three beautiful children including her three-year-old, Pippa, who was born with Down syndrome. Since the birth of Pippa, Scorsone has been a consistent supporter of GLOBAL’s work. For the last three years, Scorsone has used her formidable platform to promote greater understanding and awareness, end stigmas around people who are differently-abled, and to encourage greater access and inclusion.

Marián Ávila is an accomplished Spanish model from Barcelona, who happens to have Down syndrome. She has modelled in ad campaigns for big name brands like Levi’s and El Corte Ingles and participated in the fashion industry’s biggest Fashion Weeks, including New York Fashion Week. She has been featured in worldwide media, including leading publications such as New York Times, Vanity Fair, and Harper’s Bazaar. Ávila uses social media to meet other people and gain visibility, without judgements or labels, and to help others. She calls herself a feminist and an advocate of human rights, family, and friendship.

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

The Be Beautiful Be Yourself Fashion Show will consist of a VIP Reception with more intimate celebrity experiences for table sponsors and a quality virtual event on Saturday November 14, 2020. The event will feature GLOBAL’s 2020 Ambassador Walt Snodgrass, 18 beautiful models from 7 states and 2 countries, honorees and celebrities, and special segments including a dance battle between GLOBAL Ambassador DeOndra Dixon and her big brother Jamie Foxx.

“I know that COVID-19 has led to tough times for so many,” says GLOBAL Ambassador DeOndra Dixon, “but we have to pull together and continue to support GLOBAL and people with Down syndrome in need. I will miss the runway and the audience, but I am excited to make the virtual event a success and beat my brother in an epic dance battle!”

“Most people with Down syndrome are high risk for COVID-19, so we have put a lot of effort into education and protection over the last five months,” says GLOBAL President and CEO, Michelle Sie Whitten. “The pandemic has presented GLOBAL with many challenges this year, and we’ve met each one with strength, clarity of purpose, and compassion. We hope that people will support our first virtual event and that they know we will work hard to truly save and transform lives.”

In response to the world-wide pandemic, GLOBAL has worked hard to get out multiple versions of an informative Q&A on COVID-19/Down syndrome, provide over 140 families and 42 Down syndrome organizations with COVID-19 Emergency Relief Global Grants, and support legislation that fights discrimination against those with disabilities during crisis triage care situations.

The Be Beautiful Be Yourself Fashion Show allows GLOBAL to protect people with Down syndrome during this pandemic with their COVID-19 initiatives, provide world-class care to over 2,000 patients with Down syndrome from 28 states and 10 countries, and fund over 200 scientists working on Down syndrome research with a focus on Alzheimer’s disease, cancer, and autoimmune disorders. The event also underwrites our advocacy in D.C., resulting in a tripling of the National Institutes of Health Down syndrome research budget, as well as outreach to over 12,000 families.

To 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).

As the nation celebrates Down Syndrome Awareness Month, the Global Down Syndrome Foundation recognizes and thanks our friends and partners in Congress, the President and the White House, and the National Institutes of Health (NIH) for making Down syndrome a national research priority by significantly increasing research funding for FY2019 federal budget and going forward.

We are grateful to our congressional leaders who have championed Down syndrome research, which is one of the least funded genetic conditions at the NIH. The efforts of House and Senate Appropriations Labor-Health and Human Services Chairwoman Rosa DeLauro (D-CT), Ranking Member Tom Cole (R-OK), Chairman Roy Blunt (R-MO) and Ranking Member Patty Murray (D-WA) will improve the health and well-being of every person with Down syndrome as well as typical Americans living with and at risk for other diseases and genetic conditions, such as Alzheimer’s disease, cancer, and autoimmune disorders.

Further, by holding the first ever congressional hearing on Down syndrome research, that included the moving testimony of Representatives Cheri Bustos (D-IL) and Cathy McMorris Rodgers (R-WA), the American people gained a greater understanding of how harnessing the full power of the NIH and the national biomedical research enterprise will directly lead to improved treatments and eventually cures for these diseases that effect a majority of Americans. Global is honored and deeply grateful to you many other representatives including: Jaime Herrera Beutler (R-WA), Pete Stauber (R-MN), Lucille Roybal-Allard (D-CA), Barbara Lee (D-CA), Mark Pocan (D-WI), Katherine Clark (D-MA), Lois Frankel (D-FL), Andy Harris (R-MD), John Moolenaar (R-MI) and Tom Graves (R-GA) for championing Down Syndrome Research at NIH.

In his recent statement recognizing Down Syndrome Awareness Month, President Donald J. Trump spoke about the importance of “an inclusive Nation, one where Americans with Down syndrome are embraced in schools, workplaces, and communities—one where discrimination can no longer cast a shadow of inequality.” We thank the Administration for affirming its commitment to Down syndrome research and for joining us in celebrating the lives of those with Down syndrome.

Global Down Syndrome Foundation is an inclusive organization. We encourage and appreciate people from all walks of life to support children and adults with Down syndrome.

Global’s 10th Anniversary Be Beautiful Be Yourself Fashion Show – Celebrating a Decade of Beauty & Achievement – Attracted 1,400 Supporters & Hollywood’s Hottest Celebrities

Press Contacts:
Trisha Davis | trisha@ballantinespr.com | O: (310) 454-3080
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832

DENVER, CO Oct 23, 2018 – This past weekend, Denver was all a buzz as the Global Down Syndrome Foundation (Global) rang in its 10th Anniversary raising an outstanding $2.4 million, bringing the event’s total raised over the past decade to over $18 million. As the largest fundraiser for Down syndrome in the world, the Be Beautiful Be Yourself Fashion Show supports life-saving and transformative medical care and research. The marquee event welcomed over 1,400 guests from 23 states and 9 countries to the Sheraton Denver Downtown Hotel.

The signature fashion show featuring models with Down syndrome and their celebrity escorts included large, commemorative send-off sparklers and light-up wrist bands. The impressive celebrity lineup included: award-winning actors Jamie Foxx, Colin Farrell, Jeremy Renner, Heather Graham, Shia LaBeouf, Dakota Johnson, and John C. McGinley; supermodel Amanda Booth; Denver Bronco Cheerleaders Jozie, McKenna, and Caitlynn; Miss Colorado Ellery Jones; Soccer Player Sam Cronin; and TV personalities Kim Christiansen and Tom Green.

“What Global is doing for people with Down syndrome, including my sister DeOndra, is amazing – the science, the medical care and the important awareness,” said Foxx, who has been a dedicated supporter of Global from the start. “And you know, this is just the beginning – what we’re going to accomplish in the next ten years will be so important as our loved ones with Down syndrome age.”

The Denver Broncos showed up with major support from Super Bowl MVP Von Miller, quarterback Case Keenum, placekicker Brandon McManus, running back Phillip Lindsay, safety Justin Simmons, and tight end Jeff Heuerman. This year, Global had 27 self-advocate models, including the 2018 Ambassador Sam Levin, as well as the return of past Ambassadors: Chase Turner Perry, Sophia Kay Whitten, Katherine Vollbracht Winfield, Clarissa Capuano, Louis Rotella IV, and Marcus Sikora.

Actors Colin Farrell and Zack Gottsagen received Global’s prestigious Quincy Jones Exceptional Advocacy Award (Q Award) to standing ovations. In his acceptance speech Gottsagen said, “People with disabilities need to work together with our friends for inclusion and equal opportunities. So don’t forget to vote! I have voted in every election since I was 18 years old.” He then decided to start the catwalk early and while receiving his Q Award he was surprised by friends Shia LaBeouf and Dakota Johnson who danced down the runway with him.

An impromptu live auction saw Jamie Foxx, Jeremy Renner, Colin Farrell, Von Miller and John C. McGinley jump on stage and auction off items from Von Miller’s jacket to Jeremy Renner’s exclusive Marvel premier tickets and Colin Farrell’s exclusive Dumbo premier extravaganza.

Kacey Bingham and Brittany Bowlen served as the 2018 Be Beautiful Be Yourself Fashion Show chairs, carrying on the legacy of their mothers Kay Burke and Annabel Bowlen, who have been involved with Global since its inception. In support of the 10th Anniversary, past event chairs showed up in spades including Peter Kudla, Anna and John J. Sie, Sharon Magness Blake and Ernie Blake, Ricki Rest, and Nancy Sevo.

Entering its 10th year, Global is thriving. The millions raised at the Be Beautiful Be Yourself Fashion Show every year help fund Global’s world-class and unprecedented Down syndrome research and medical care which is helping to increase lifespan and quality of life of people with the condition.

“On our 10th Anniversary, we are so grateful to our dedicated medical professionals at the Sie Center for Down Syndrome at Children’s Hospital Colorado, our brilliant scientists at the Crnic Institute for Down Syndrome on the Anschutz Medical Campus, our Down syndrome partner organizations, generous sponsors, influential celebrities, amazing self-advocates and families, and our hardworking team!” said Global President and CEO Michelle Sie Whitten.

Global’s recent lobbying efforts to Congress and outreach to the National Institutes of Health (NIH) resulted in the first significant increase of NIH Down syndrome research funding in nearly 20 years, resulting from $35 million in 2017, to $58 million in 2018, to 98 million in 2019. Additionally, Global just opened its new Cherry Creek headquarters, which includes top-notch office facilities and a future education center of excellence supported by a generous grant from The Salah Foundation. The building will be a home for people with Down syndrome and their families, as well as a destination for inclusion, inspiration, and achievement for everyone.
“Together, we are transforming and saving lives.”

Missed the event? It’s not too late to get involved! See photos from the event and read all the top media coverage.

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

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

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About the Global Down Syndrome Foundation

The Global Down Syndrome Foundation is at the forefront of research, medical care, education and advocacy dedicated to significantly improving the lives of people with Down syndrome. Global supports the research of hundreds of scientists around the world through their advocates, partners and affiliates, including the Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome. Global invites its supporters to celebrate a decade of milestones in helping people with Down syndrome at their 10th Anniversary Be Beautiful Be Yourself Fashion Show. To learn more, please visit www.globaldownsyndrome.org and www.bebeautifulbeyourself.org.

As the nation celebrates Down Syndrome Awareness Month, the Global Down Syndrome Foundation recognizes and thanks our friends and partners in Congress, the President and the White House, and the National Institutes of Health (NIH) for making Down syndrome a national research priority by significantly increasing research funding for FY2018 federal budget and going forward.

We are grateful to our congressional leaders who have championed Down syndrome research, which is one of the least funded genetic conditions at the NIH. The efforts of House Appropriations Labor-Health and Human Services Chairman Tom Cole (R-OK) and Ranking Member Rosa DeLauro (D-CT) will improve the health and well-being of every person with Down syndrome as well as typical Americans living with and at risk for other diseases and genetic conditions, such as Alzheimer’s disease, cancer, and autoimmune disorders. Further, by holding the first ever congressional hearing on Down syndrome research, that included the moving testimony of Representatives Cheri Bustos (D-IL), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX), the American people gained a greater understanding of how harnessing the full power of the NIH and the national biomedical research enterprise will directly lead to improved treatments and eventually cures for these diseases that effect a majority of Americans.

In his recent statement recognizing Down Syndrome Awareness Month, President Donald J. Trump spoke about the importance of “deepening our understanding of Down syndrome and learning more about how we can ensure the beautiful people with Down syndrome are able to fully participate in society.” We thank the Administration for affirming its commitment to Down syndrome research and for joining us in celebrating the lives of those with Down syndrome.

Global Down Syndrome Foundation is an inclusive organization. We encourage and appreciate people from all walks of life to support children and adults with Down syndrome.

Celebrities vow to raise awareness and funds for life-changing medical care & research at Global’s 10th Anniversary Be Beautiful Be Yourself Fashion Show – Celebrating a decade of beauty and achievement

Press Contacts:
Trisha Davis | trisha@ballantinespr.com | O: (310) 454-3080
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832

DENVER, CO. – Tuesday, Oct. 9, 2018 – Today the Global Down Syndrome Foundation (Global) announced academy-award nominee and Marvel’s “Hawkeye” Jeremy Renner, Super Bowl 50 MVP Von Miller, award-winning actor and Global board member John C. McGinley and supermodel and actress Amanda Booth will join its celebrity lineup for this year’s 10th Anniversary of the Be Beautiful Be Yourself Fashion Show. The 10th Anniversary will underscore and celebrate a decade of beauty and achievement. The marquee event is the largest Down syndrome fundraiser in the world and will be held during Down Syndrome Awareness Month on Saturday, Oct. 20, 2018 at the Sheraton Denver Downtown Hotel, 1550 Court Place in Denver.

Renner, Miller, McGinley and Booth will join Global’s 2018 Quincy Jones Exceptional Advocacy Award (Q Award) winners and film stars, Colin Farrell and Zack Gottsagen. Both actors are passionate advocates for the differently-abled, and Zack himself has Down syndrome.

Other confirmed celebrities for the 10th Anniversary Be Beautiful Be Yourself Fashion Show include: Miss Colorado Ellery Jones; Major League Soccer player Sam Cronin; Denver Broncos players Justin Simmons, Bradley Chubb, Ron Leary, and Brandon McManus; and past Q Award winner DeOndra Dixon.

During the fashion show, Global will also honor the 2018 Be Beautiful Be Yourself Ambassador Sam Levin while celebrating the return of past Ambassadors: Chase Turner Perry, Sophia Kay Whitten, Katherine Vollbracht Winfield, Clarissa Capuano, Louis Rotella IV and Marcus Sikora.

Entering its 10th year, Global is thriving. Since the establishment of the Be Beautiful Be Yourself Fashion Show, the event has raised over $16 million which underwrites life-changing research and life-saving medical care. Global’s recent lobbying efforts to Congress and outreach to the National Institutes of Health (NIH) resulted in the first significant increase of NIH Down syndrome research funding in nearly 20 years, from $35 million in 2017 to $58 million in 2018. Additionally, Global just opened its new Cherry Creek headquarters, which includes top-notch office facilities and a future education center of excellence supported by a generous grant from The Salah Foundation. The building will be a home for people with Down syndrome and their families, as well as a destination for inclusion, inspiration and achievement for everyone.

“We work very hard,” said Global Down Syndrome Foundation President, CEO and Co-Founder, Michelle Sie Whitten. “Global provides excellent medical care to over 1,500 patients from 28 states and 10 countries, has made groundbreaking research discoveries that will improve health outcomes and has successfully lobbied Congress to get our fair share of funding. On our 10th Anniversary, we are filled with gratitude for the outstanding medical professionals, scientists, Congressional champions, Down syndrome partner organizations, celebrities and wonderful self-advocates and families who empower us to save and transform lives every day.”

Various levels of 10th Anniversary Be Beautiful Be Yourself Fashion Show tickets, table sponsorships and model sponsorships are available, including VIP levels at www.bebeautifulbeyourself.org.

For more information on the Global Down Syndrome Foundation, please visit www.globaldownsyndrome.org.

For celebrity interviews, additional information, imagery or to cover the Be Beautiful Be Yourself Fashion Show, please contact trisha@ballantinespr.com.

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About the Global Down Syndrome Foundation

The Global Down Syndrome Foundation is at the forefront of research, medical care, education and advocacy dedicated to significantly improving the lives of people with Down syndrome. Global supports the research of hundreds of scientists around the world through their advocates, partners and affiliates, including the Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome. Global invites its supporters to celebrate a decade of milestones in helping people with Down syndrome at their 10th Anniversary Be Beautiful Be Yourself Fashion Show. To learn more, please visit www.globaldownsyndrome.org and www.bebeautifulbeyourself.org.