Archive for October, 2018

$2.9 Million For Down Syndrome & Alzheimer’s Research

October 31st, 2018 by Global Down Syndrome Foundation

Crnic Institute’s supergroup scientists received a $2.9 million grant from the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH) for their important research on beta-amyloid, the protein encoded on chromosome 21 that causes Alzheimer’s disease.

Because individuals with Down syndrome carry an extra copy of the gene that encodes the beta-amyloid, nearly every person with Down syndrome will develop the brain pathology of Alzheimer’s disease at a relatively young age. However, there are major gaps in the understanding of how beta-amyloid disrupts neuron function in Down syndrome and Alzheimer’s disease.

This team hopes to reveal how beta-amyloid causes the loss of connections between neurons so that new therapeutic strategies to block the neurotoxic activities of beta-amyloid can be developed.

Meet Our Scientists

Mark Dell’Acqua, PhD

Mark Dell’Acqua, PhD
Professor and Vice Chair of Pharmacology at University of Colorado Anschutz Medical Campus
Recipient of Crnic’s Grand Challenge Grant Program in 2013

Dell’Acqua’s research focuses on the role of calcium signaling in Alzheimer’s pathology.


Matthew Kennedy, PhD

Matthew Kennedy, PhD
Associate Professor at University of Colorado Anschutz Medical Campus, Department of Pharmacology
Recipient of Crnic’s Grand Challenge Grant Program in 2013 and 2015

Kennedy studies how increase beta-amyloid production causes synapse loss.


Ulrich Bayer, PhD

Ulrich Bayer, PhD
Professor at University of Colorado Anschutz Medical Campus, Department of Pharmacology

Bayer is focused on neurological disorders and how molecular mechanisms can affect learning, memory, and cognition.

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

October 25th, 2018 by Global Down Syndrome Foundation

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

GLOBAL DOWN SYNDROME FOUNDATION RAISES OUTSTANDING $2.4 MILLION

October 23rd, 2018 by Global Down Syndrome Foundation

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 Davistrisha@ballantinespr.com | O: (310) 454-3080
Anca Callacall@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.

The Salah Foundation: A Brave Family Making a Huge Difference

October 23rd, 2018 by Global Down Syndrome Foundation

Salah

From Down Syndrome World Issue 3 2018

The Salah family and the Salah Foundation are giving countless people hope, life-changing support, and a brighter future. For the Global Down Syndrome Foundation, the Salah Foundation is making its dream come true — the opening of a state-of-the-art education center for the differently-abled.

THE SALAH FAMILY is originally from Lebanon, a country of great maritime and cultural history, where even in the second millennium BC, people living in the area cultivated land in a sophisticated society. The ancient Lebanese were creators of the oldest known 24-letter alphabet, and eventually, their alphabet would influence Hebrew, Aramaic, and other languages throughout the Mediterranean region. More recent history has been tumultuous for Lebanon, including during World War I (1914–1918), after which the country was put under the direct control of France. It was during this difficult time, in 1919, that Joseph and Nora Salah courageously left their Maronite Christian hometown and emigrated from Lebanon to the United States in pursuit of a better life.
With little money and unable to speak English, the Salahs worked hard to make a life for themselves and their three children: Isabel, James, and George. James “Jim” Salah was a natural and brilliant entrepreneur. He started his own construction business in Boston, handling some of the city’s largest utility projects, and then branched out into real estate and heavy equipment leasing, and his companies prospered. Upon his death in 2009, The Salah Foundation was founded and now serves as a living tribute to his lifelong success and generosity. Today, Jim’s commitment to philanthropy lives on through his niece, Noreen Salah Burpee, who serves as Executive Director of the foundation.

A FORMIDABLE FORCE FOR GOOD
Under the direction of Burpee, The Salah Foundation has become a formidable force for good. “We have a special interest in self-sufficiency programs,” Burpee explains. “We seek to improve the lives of the under educated, undernourished, and medically needy to become productive and responsible citizens.” The foundation has an emphasis on the economically disadvantaged, young, elderly, and disabled. “The need for responsible philanthropy is almost overwhelming,” Burpee said. “Our greatest inspiration is when we witness someone breaking the cycle of poverty, or ignorance, or homelessness.” Burpee has tapped her own three children — Fred Churbuck, Megan Fearnow, and George J. Taylor — to share the responsibility of philanthropy. “It is a privilege to work together as a family ,” Burpee explains. “Each board member brings their own personal passions to the table. We are a brave family and not afraid to fund the underserved.” Some important organizations that are close to their hearts include The Salah Foundation’s Children’s Hospital at Broward Health and The Noreen Salah Burpee Adult Infusion Center, an inpatient cancer center, both in Fort Lauderdale, Florida, and most recently, The Salah Foundation Learning Zone at the future Global Down Syndrome Foundation Education Center of Excellence. The Salah Foundation connected with Global’s dedication to research, medical care, education, and advocacy for people with
Down syndrome. When the family learned about the lack of research funding and medical care and the discrimination against people with Down syndrome, Burpee says she was “very moved by each child with Down syndrome and their supporting families. The very thought that their needs and the needs of children like them were
not being met made us very sad.” “Research is the key,” she continues. “People must be educated on the difficulties and lives of these children so they can live productive, meaningful lives, and Global is doing just that.”


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!


TWO GENERATIONS OF IMPACT GIVING
Burpee’s son, Fred Churbuck, was the first to experience Global at one of our annual Be Beautiful Be Yourself Fashion Show fundraisers. Churbuck admits that at first he didn’t want to attend. “I thought I would feel uncomfortable,” he says. “I had never met a person with Down syndrome.” Then something magical happened. The keynote speaker, Tim Harris, came out, and his speech touched Churbuck. “He was so energetic and articulate, and then he turns to the audience and says, ‘I’m living my dream. You ask yourself, are you living yours? Are you the best you can be?” Churbuck retells the moment. “For the next few weeks, I had all my marketing team watch Tim on video, and we were all inspired.” Over the next two years, The Salah Foundation generously funded Global’s important adult life skills classes and a post – secondary research study that spelled out, for the first time , how adults with Down syndrome best learn life skills and improve their cognitive abilities. “The support that Salah provided to our class and research helped us to make adults more self-sufficient while being able to create and share best practices,” says Bryn Gelaro, LSW (licensed social worker), Global’s Director of Adult Initiatives and Special Projects. Then in 2017, four years to the date of Churbuck at tending Global’s annual fundraiser, the Salah family at tended with a game-changing surprise announcement. Burpee got on stage and announced a new pledge to help under write Global’s future Education Center of Excellence with the lar gest single donation Global has received — $1 million. “We are out of our minds grateful!” says Michelle Sie Whitten, President and CEO of Global. “The Salah Foundation was amazingly generous, and it was so hard to keep it a secret — literally even our board didn’t know. We were so intent on making it a surprise. There were 1,400 people in attendance, we were sold out, and then the lovely, articulate Noreen gets up there and just makes the announcement. Even Quincy Jones, John C. McGinley, Jamie Foxx, and Eva Longoria were high-fiving each other!” Burpee recalls, “When I made that pledge and hear d the gasps and then the applause, I looked to my family’s table and saw them standing and wildly applauding. It took my breath away.” The 2017 Be Beautiful Be Yourself Fashion Show was the largest grossing Global fundraiser to date.

INCLUSION, INSPIRATION, AND ACHIEVEMENT
Global’s future Education Center will open in 2019. The Education Center will house The Salah Foundation Learning Zone where transformative educational programs for adults and children with Down syndrome will be held. To better understand the needs of the local community, Global organized an informal listening campaign and survey resulting in 26 disability organizations identifying programs and classes that could take place in The Salah Foundation Learning Zone. Examples of programs already being planned are cooking classes, computer classes, and summer center-based learning classes so children with Down syndrome can be better prepared for the school year. The Education Center is nestled between the Cherry Creek neighborhood of over 1,000 residents and the vibrant Cherry Creek North shopping district with over 600 businesses and 8 ,000 employees. A key focus of the center will be vocational training with the long-term goal of having 30 to 40 people who are differently abled working in Cherry Creek North. “We are not just a check-writing foundation but a partner in philanthropy,” Burpee says. The partnership with The Salah Foundation and the Salah family will surely empower the dreams of those with Down syndrome and the differently-abled for years to come.

The Salah Foundation is a private foundation that makes investments in nonprofits by invitation only.

Salah
Draft rendering of The Salah Foundation Learning Zone at Global Down Syndrome Foundation Courtesy of OfficeScapes and ArtHouse Design


Like this article? Join Global Down Syndrome Foundation’s Membership program today to receive 4 issues of the quarterly award-winning publication, plus access to 4 seasonal educational Webinar Series, and eligibility to apply for Global’s Employment and Educational Grants.
Register today at downsyndromeworld.org!

Sam Levin Tribute Video

October 22nd, 2018 by Global Down Syndrome Foundation

The Global Down Syndrome Foundation honored Ambassador Sam Levin at the 10th Anniversary Be Beautiful Be Yourself Fashion Show on Saturday, October 20, 2018.

A Center For Life-Changing Care

October 12th, 2018 by Global Down Syndrome Foundation

The Sie Center

From Down Syndrome World Winter 2017

Since its inception in 2010, The Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado has championed healthy starts and bright futures by caring for the unique medical needs of young people with down syndrome.

WHEN HER DAUGHTER, Sophia, was born with Down syndrome 13 years ago, Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation, traveled more than 1,000 miles from her home in Denver to the Thomas Center for Down Syndrome Services at Cincinnati Children’s Hospital Medical Center to find the specialized medical care Sophia needed. After talking with other local families making the same trek, Whitten began exploring what it would take to bring a similar center to Colorado.

“The initial thinking was, ‘Why should we have to travel?’” Whitten said. “Why shouldn’t Colorado have a fabulous, world-class pediatric medical center for kids with Down syndrome?”

From Whitten’s due diligence and efforts, and funding from Sophia’s grandparents, Anna and John J. Sie, came the Sie Center, a medical center that opened in 2010 at Children’s Hospital Colorado as part of the Linda Crnic Institute for Down Syndrome.

PUTTING POTENTIAL WITHIN REACH

“There’s a lot of talk about people with Down syndrome reaching their full potential,” Whitten said. “At Global, we feel very strongly that without good health, you’ll never reach your full potential.”

Helping children and young adults up to age 21, the Sie Center’s team of medical professionals provides the expert care and resources needed to manage a wide range of physical and behavioral health issues associated with Down syndrome. These specialists work closely with primary care providers at Children’s Hospital Colorado to coordinate care and deliver services through seven clinics.

At the Medical Clinic, a developmental pediatrician, nurse, and physical therapist evaluate children’s medical issues and physical growth to develop a comprehensive care plan. During visits, kids may also see an occupational therapist as needed.


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

The Sie Center’s Feeding Clinic offers families an opportunity to visit with a feeding and swallowing specialist, developmental pediatrician or nurse practitioner, physical therapist, and social worker. These providers help parents address muscle weakness and other issues with eating and drinking that can interfere with a child’s ability to breast-feed, chew, and/or swallow and therefore raise his or her risk of silent aspiration.

The ENT Clinic helps manage diseases of the ear, nose, and throat, including chronic ear infections, airway obstructions, and hearing loss. Approximately 70 to 75 percent of kids with Down syndrome deal with hearing loss, according to the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

The Sie Center is the first center of its kind to have a full-time School-Age Clinic. The clinic’s educational specialist and psychologist help families develop individualized education programs and identify medical problems that may contribute to difficulties with behavior and learning. For example, a child who is acting out in gym class may do so because his feet hurt — not because he doesn’t want to participate in the activity.

“These specialists are like medical detectives,” Whitten said. “They work very closely to understand what’s happening at school and what modifications, support, and resources may be helpful.”

Through the Infant Clinic, babies receive a complete evaluation of their physical health to identify medical needs at a very early age.

At the Sleep Clinic, physicians evaluate children for sleep disorders and help parents troubleshoot solutions for common challenges, such as using a continuous positive airway pressure machine.

Currently, the Telemedicine Clinic connects Sie Center specialists with providers in Durango, Colorado, who treat children with Down syndrome, but Whitten said the goal is to expand the service to benefit the maximum possible number of patients.

In addition to these clinics, the Sie Center recently instituted a mental wellness program. Often, young people experiencing regression or warning signs of depression and anxiety are told that these symptoms are complications related to Down syndrome. However, these issues may be treatable mental illnesses, just as they would be for typical young adults.

A GLOBAL IMPACT

The clinic’s specialists are actively involved in clinical research projects that will help doctors around the world improve care for children with Down syndrome.

Arwen Jackson, MA, CCC-SLP; Jennifer Maybee, OTR, MA, CCC-SLP; Maura K. Moran; Kristine Wolter-Warmerdam; and Francis Hickey, M.D., FAAP, all with the Sie Center or Children’s Hospital Colorado, published their latest study on aspir ation in the international journal Dysphagia.

“Doctors at Children’s Hospital Colorado are also joint appointees at the University of Colorado School of Medicine, so we’re able to get a lot of medical students who are required to do a fellowship or some kind of rotation,” Whitten said. “Working with the Sie Center gives them an in-depth look at the best way to provide medical care to patients with Down syndrome, and that carries over to the care they give in the future.

“The services the Sie Center provides are nothing short of life-changing, if not lifesaving,” Whitten added. “I’ve spoken with parents who’ve told me, ‘I was always afraid, but now that I’m at the Sie Center, I understand what’s going on. I know what I’m supposed to be doing for my child’s health.’”

CARE COUNTS

The Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado is one of the largest centers of its kind in the world. Here’s a snapshot of the clinic’s impact:

• More than 1,500 visits take place at the Sie Center each year.
• The Sie Center serves approximately 1,300 patients annually.
• The pediatricians, specialists, and therapists at the Sie Center have more than 80 years collective experience caring for children with Down syndrome.
• Families representing 26 states, seven countries, and Puerto Rico seek care at the Sie Center.

Global provides continued financial support for the Sie Center. Visit The Sie Center web page to learn how you can help efforts to provide medical care for children and young adults with Down syndrome. 


Like this article? Join Global Down Syndrome Foundation’s Membership program today to receive 4 issues of the quarterly award-winning publication, plus access to 4 seasonal educational Webinar Series, and eligibility to apply for Global’s Employment and Educational Grants.
Register today at downsyndromeworld.org!

On September 26, 2018, 200 scientists met to discuss their newest important research on trisomy 21 at the Crnic Institute for Down Syndrome’s 8th Annual Down Syndrome Symposium.

Below, find a short, simple breakdown of the latest Down syndrome research. (And you don’t have to be a scientist to get it!) Click on the scientist’s bio for more detailed information on their work.

Your Science Recap:

Roger Reeves

Keynote Speaker Roger Reeves, PhD
Professor, John Hopkins University School of Medicine
Department of Physiology

Approaches to Down syndrome research
Mouse models have been a game-changer for Down syndrome research. Reeves talked about the advantages and disadvantages of the various mouse models of trisomy 21, on how they can advance our understanding of the organismal impacts of the extra chromosome.


Niklaus Mueller

Niklaus Mueller, PhD
Assistant Research Professor, Ophthalmology, CU AMC

Ocular Lens in Down Syndrome
70% of children with Down syndrome have vision issues. Mueller’s team studies how trisomy 21 impacts on the development of the ocular lens in people with Down syndrome causes. One goal of this research is to better understand the higher risk of visual impairments and potentially cure conditions like cataracts.


Stephanie Moon

Stephanie Moon, PhD
Post-doctoral researcher
Biochemistry, CU Boulder

White Matter Loss in the Brain
As individuals with Down syndrome age, there is distinct degenerative alterations in the so called ‘white matter’ in the brain. Moon’s team studies a condition known as Vanishing White Matter disease (VWMD) to see if there are common mechanisms between Down syndrome and VWMD.


Rani Powers

Rani Powers, PhD
Graduate student
Pharmacology, CU AMC

Human Trisome Project
Powers work on The Human Trisome Project, which studies why people with Down syndrome are protected from some medical conditions, such as solid tumor cancers, while highly predisposed to others, such Alzheimer’s disease. Powers’ specific research focuses on metabolic changes causes by the extra chromosome.


Lee Reinhardt

Lee Reinhardt, PhD
Assistant Professor
Biomedical Research, NJ Health

Respiratory Asthma & Allergy
The recurrent respiratory wheezing common in people with Down syndrome is often misdiagnosed as asthma. In fact, people with Down syndrome are naturally protected from certain forms of allergies. Dr. Reinhardt is investigating the mechanisms by which trisomy 21 alters the immune system toward an state that decreases the likelihood of developing allergies.


Charles Hoeffer

Charles Hoeffer, PhD
Associate Professor
IBG, CU Boulder

Sleep in Down syndrome
Hoeffer and his lab study how overexpressed genes in chromosome 21 affect various neurological processes in Down syndrome. Many people with Down syndrome have difficulty sleeping, which is often associated with obstructive sleep apnea. To learn more about this, Dr. Hoeffer’s team employed animals models of Down syndrome to perform deep analysis of sleep patterns, leading to discovery of sleep alterations distinct for obstructive sleep apnea.


Huntington Potter

Huntington Potter, PhD
Kurt and Edith von Kaulla Professor
Neurology, Crnic Institute, CU AMC

Alzheimer’s disease & Down syndrome
100% of people with Down syndrome will develop the brain pathology of Alzheimer’s disease by the time they are 40 years old, but the likelihood of developing dementia is highly variable. Studying the mechanistic relationship between the two conditions, Potter and his team are hard at work to find a cure. Dr. Potter’s team is currently completing clinical trials for an immune-modulatory molecule that effectively reverse Alzheimer’s pathology in mouse models.


Kathleen Gardiner

Katheleen Gardiner, PhD
Research Professor
Pediatrics, Crnic Institute, CU AMC

Learning and Memory in Down syndrome
Gardiner and her lab employ mouse models to understand the mechanisms leading to cognitive impairment in Down syndrome, with an special emphasis on the impact of age, sex, and genetic background.


To learn more about the work the scientists at the Crnic Institute are doing, visit here.

To participate in the Crnic Institute’s Human Trisome Project, visit here.

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 Davistrisha@ballantinespr.com | O: (310) 454-3080
Anca Callacall@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 ChubbRon 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.

A Country Star Bids Farewell

October 2nd, 2018 by Global Down Syndrome Foundation

From Down Syndrome World Spring 2016

FACING TERMINAL CANCER, Joey Feek, one half of the Grammy nominated country music duo Joey+Rory, knew her time was limited. Her husband would be left to raise “Indy,” their daughter with Down syndrome, without her. So she made a radical, selfless decision.

“She started going against everything in her being that told her to hold her baby even tighter, and instead, she handed the baby to me,” Rory wrote on his blog, This Life I Live, where he details their journey with honesty, sincerity, and grace. Rory said Joey felt it was best for him and Indy to strengthen their bond for the future. “She carried the pain on her own shoulders, to try to keep it off of mine — and even more so, off of Indy’s.”

Joey passed away on March 4, shortly after reaching one final goal — to see Indiana turn 2 — on a day that Rory called “nothing but joy and more joy.”

“[Indiana] has a way of bringing even the most painful parts of life back into perspective.”


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

WHEN I’M GONE
Now their own version of a dynamic duo , Indy and Rory continue to work through common issues for a child with Down syndrome. She attends High Hopes Development Center, an inclusive preschool and pediatric therapy clinic in Franklin, Tennessee, which Joey and Rory selected together. Rory wrote that Indy loves being around all the other kids, gets physical therapy to learn to walk, and receives speech therapy to “start turning all the words she can say with her hands into sentences she can say with her mouth.”

“Joey was so excited about Indy getting the chance to come to High Hopes, and I was so thankful that she felt great about it.
Somehow she managed to transform her disappointment of not getting to raise and teach Indy into a real hope of something even better,” Rory reflected.

Indiana also delights in the world her mother loved so much, a country life on their farm.

“Like her mama, she likes being outside. She loves pointing out the horses to me, or making sounds like she’s telling me all about the flowers or the windmill that turns up on the hill,” he revealed.

FAITH IN THE FUTURE
Indy and Rory get through life’s challenges with help from an extended network of family and friends, including his two grown daughters from a previous marriage — Heidi and Hopie — as well as his manager, cousin, and friend, Aaron Carnahan, who had his own experience raising a son with Down syndrome.
Despite the extraordinary circumstances, Rory knows the time he and Indy shared with Joey will continue to give them hope.

“Tucked away in her little heart will be all of the beautiful memories of these first two years that she has shared with her mama, and when the
time is right, she will find them and they will make her smile,” Rory wrote.

“Yes, she will remember. I believe that.”

To learn more about Rory, Joey, and Indiana Feek, visit thislifeilive.com or facebook.com/joeyandrory.


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