Archive for the ‘Press Releases’ Category

Generous $1 million grant will help establish a much-needed education center at Global’s new international HQ in Denver 

Media Contacts:
Kathy Green | kgreen@globaldownsyndrome.org | (720) 280-9725
Anca Call | acall@globaldownsyndrome.org | (720) 320-3832

DENVER – The Global Down Syndrome Foundation (Global) today announced a transformative lead gift of $1 million from The Salah Foundation. Combined with the generous $1 million grant, Global will receive additional matching funds that will help to establish a center in Denver dedicated to educational activities primarily for people with Down syndrome but also for others who are differently-abled.

The gift was unveiled by Noreen Salah Burpee, executive director of The Salah Foundation, at Global’s annual record-breaking Be Beautiful Be Yourself Fashion Show held on Nov. 11, 2017, at the Sheraton Denver Downtown Hotel. The announcement brought a crowd of more than 1,300 including advocates with Down syndrome, their families, friends, supporters, and celebrities Quincy Jones, Jamie Foxx, DeOndra Dixon, Marisa Tomei, Joe Manganiello, John C. McGinley, Matt Dillon and Eva Longoria to their feet.

“We are so grateful for The Salah Foundation and Noreen for making this generous and impactful gift to the Global Down Syndrome Foundation,” said John C. McGinley, award-winning actor and Global board member after hearing the announcement backstage at the fashion show. “The team at Global works hard and is truly delivering for the Down syndrome community. This will allow them to reach even more people.”

“We are thrilled to support the work of the Global Down Syndrome Foundation as they continue to create extraordinary change in the lives of people with Down syndrome and their families,” said Salah Burpee. “We hope that others will follow suit and open their hearts and wallets to this important project.”

The education center will be housed in Global’s new international headquarters in Denver in the Cherry Creek Shopping North – one of the most popular districts in Colorado with the fastest growing foot traffic. It is anticipated that the multi-use education center will provide cooking classes, computer labs and other center-based educational programs for varying ages and abilities and will open sometime in the second half of 2018.

Global supports the research of hundreds of scientists around the world and helped establish the first and only academic home for Down syndrome research at the Crnic Institute for Down Syndrome at the University of Colorado School of Medicine at the Anschutz Medical Campus, with a focus on Alzheimer’s disease, cancer, and autoimmune disorders.

Global funding also helps provide the highest quality of comprehensive medical care to thousands of children with Down syndrome from around the world through the Sie Center for Down Syndrome at Children’s Hospital Colorado, coordinating medical care, along with therapies including speech, physical and occupational therapy.

“We are grateful for the continued support of The Salah Foundation as we advance our mission,” said Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation. “Noreen, Fred, Megan and the whole Salah family have believed in our work, provided us guidance to expand, and now have given us this extraordinary gift that simultaneously increases our impact on people with Down syndrome and helps ensure my parents’ legacy. I can’t tell you how meaningful that is to us.”

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About The Salah Foundation

The Salah Foundation is a private foundation, by invitation only, that supports non-profit organizations in the United States that strengthen families and communities and advances individuals to become productive and responsible citizens. There is a special interest in education, medical research, community development, and self-sufficiency programs aimed at the economically disadvantaged, the young, the elderly and the disabled. To learn more, visit www.salahfoundation.org. 

About the Global Down Syndrome Foundation

The Global Down Syndrome Foundation is at the forefront of research, medical care, education and advocacy dedicated to significantly improving the lives of people with Down syndrome. Supporting the research of hundreds of scientists around the world, and through our advocates, partners, and affiliates including the Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome, Global is making an impact on the lives of people with Down syndrome today, and remain focused on finding solutions tomorrow. We are committed to helping people with Down syndrome realize their fullest potential and lead healthy and productive lives. To learn more, visit. www.globaldownsyndrome.org.

The sold-out star-studded event attracted over 1,300 attendees from 22 states and 10 countries

Media Contacts:
Kathy Green | kgreen@globaldownsyndrome.org | 720-280-9725
Anca Elena Call | acall@globaldownsyndrome.org | 720-320-3832

DENVER – The Global Down Syndrome Foundation raised a record $2.6 million for life-changing research and medical care at its 9th annual Be Beautiful Be Yourself Fashion Show held on Saturday, Nov. 11, 2017, at the Sheraton Downtown Denver.

Chaired by Peter Kudla, CEO of Metropolitan Homes Inc., the sold-out event attracted more than 1,300 attendees from 22 states and 10 countries. Music Icon Quincy Jones was on hand to present his namesake award, the “Q Exceptional Advocacy Award” to actress and activist Eva Longoria and to model phenom Madeline Stuart. The fashion show grand finale procession to Quincy Jones’ “We Are the World” brought the audience to its feet.

A roster of impressive celebrities and VIPs including Jamie Foxx, DeOndra Dixon, Marisa Tomei, Joe Manganiello, John C. McGinley, Matt Dillon, Denis O’Hare, Amanda Booth and 2017 Ambassador Marcus Sikora made powerful contributions to the evening.

“This is the fourth year in a row that we have sold out,” said Global President and CEO Michelle Sie Whitten. “It is deeply gratifying to know that so many people care about the terrible lack of funding for Down syndrome research and medical care. Of course, our models with Down syndrome make the event so joyous and inspirational, it has become an annual destination for our families and supporters.”

Global’s Be Beautiful Be Yourself Fashion Show is the single largest fundraiser benefitting people with Down syndrome in the world. The money raised supports critical research conducted by the Crnic Institute for Down Syndrome on the Anschutz Medical Campus and life-saving medical care at the Sie Center for Down Syndrome at Children’s Hospital Colorado. This year’s proceeds add to the over $14 million already raised in the previous eight fashion shows held by Global Down Syndrome Foundation.

“Global’s research funding is already helping us make giant strides in exploring the unique disease spectrum affecting the population with Down syndrome,” said Dr. Joaquín Espinosa, executive director of the Crnic Institute. “We now know that Down syndrome can be understood in large measure as an immune system disorder, which opens the door to find new treatments and therapies, and allows us to better explore the connections that may help cure Alzheimer’s disease.”

Down syndrome is the leading cause of developmental delay and the population of people with the condition is increasing dramatically in the U.S. Yet over the last two decades Down syndrome has been one of the least funded genetic conditions by the federal government, specifically the National Institutes of Health.

WASHINGTON – The Global Down Syndrome Foundation thanked Chairman Tom Cole (R-OK) and Ranking Member Rosa DeLauro (D-CT) for scheduling a hearing on Down syndrome research with the U.S. House of Representatives Appropriations Subcommittee on Labor, Health and Human Services, and Education. The hearing will take place on Wednesday, October 25, 2017. Titled “Down Syndrome: Update on the State of the Science & Potential for Discoveries Across Other Major Diseases,” the hearing will be the first Congressional hearing to explore how Down syndrome research can lead to new treatments for life-altering medical conditions including Alzheimer’s disease, autoimmune disorders, and cancer. The hearing will include testimony from Rep. Cathy McMorris Rodgers (R-WA), Rep. Cheri Bustos (D-IL), and Rep. Pete Sessions (R-TX), all champions for Down syndrome research funding in Congress.

“Funding for Down syndrome research at the National Institutes of Health unquestionably affects the health of people with Down syndrome,” said Global Down Syndrome Foundation President & CEO Michelle Sie Whitten. “This important hearing will explore how current and future Down syndrome research can help people with Down syndrome and lead to life-changing treatments for devastating diseases like Alzheimer’s and cancer. We are grateful to Chairman Tom Cole and Ranking Member Rosa DeLauro for scheduling this important hearing so Congress can learn more about the broad impact of Down syndrome research for millions of people who live with this particular condition, and for countless others who can benefit from the groundbreaking medical treatments that will develop as a result.”

“The advocacy efforts of Rep. Cathy McMorris Rodgers, Rep. Cheri Bustos, and Rep. Pete Sessions have been instrumental in advancing Down syndrome research,” Whitten continued. “Their testimony will underscore the need to increase funding so we can continue these important efforts for people with Down syndrome and their families.

The Subcommittee will also hear testimony from internationally recognized researchers and leaders from the Down syndrome community including:

Michelle Sie Whitten, Founder, CEO, and President of the Global Down Syndrome Foundation

Dr. Joaquín M. Espinosa, Executive Director of the Linda Crnic Institute for Down Syndrome and Director of The Functional Genomics Facility, University of Colorado School of Medicine, and Co-Leader of the Molecular Oncology Program at the University of Colorado Cancer Center

Dr. William Mobley, Executive Director of the Down Syndrome Center for Research and Treatment, and Florence Riford Chair of Alzheimer’s Disease Research, University of California – San Diego

Frank Stephens
Actor, Author and Advocate, Board of Directors of Special Olympics Virginia

Additional information can be found on the House Committee on Appropriation web site.

Read more about the Global Down Syndrome Foundation here: https://www.globaldownsyndrome.org/

Media Contact
Name: Ed Mullen
Email: emullen@georgetowngroup.com
Phone: (202) 329-4855

Anca Call
Email: Acall@globaldownsyndrome.org
Phone: (720) 320-3832

Follow on Twitter at: https://twitter.com/GDSFoundation
Follow on Facebook at: https://www.facebook.com/GDSFoundation/

SOURCE Global Down Syndrome Foundation

Related Links

https://www.globaldownsyndrome.org/

https://appropriations.house.gov/calendar/eventsingle.aspx?EventID=395058

During Down Syndrome Awareness Month celebrities vow to raise awareness for life-changing research in support of the foundation’s annual fundraiser next month in Denver

DENVER – Today the Global Down Syndrome Foundation announced its full celebrity lineup for this year’s 9^th annual Be Beautiful Be Yourself Fashion Show, as well as its Quincy Jones Exceptional Advocacy Award (Q Award) winners. The fashion show is the single largest fundraiser benefiting people with Down syndrome, and will be held on Saturday, Nov. 11, 2017 at the Sheraton Denver Downtown Hotel, 1550 Court Place in Denver.

Models – including Marcus Sikora, 2017 Global Ambassador, Madeline Stuart, Australian Model and 2017 Q Award Winner, and DeOndra Dixon, past Global Ambassador and Q Award Winner – will be joined on the Be Beautiful Be Yourself Fashion Show runway by celebrities including: Eva Longoria, Award-winning Actress, Producer, Director, Entrepreneur and 2017 Q Award winner; Jamie Foxx, Oscar Winning Actor, Grammy Winning Musician, and Comedian; Quincy Jones, 27-time Grammy Award Winning Musician, Music Icon, Entertainment Mogul, Entrepreneur and Humanitarian; Marisa Tomei, Oscar Winning Actress; Joe Manganiello, Star of True Blood and Magic Mike; Denis O’Hare, Tony Award Winning Actor and Star of True Blood; John C. McGinley, Award-winning Actor, and Global Board Member; and Amanda Booth, Actress and Model.

“This is a special year for Global as we have had two major scientific breakthroughs that are a direct result of the donations we have raised at our fashion show in past years,” said Global Down Syndrome Foundation President, CEO and Co-Founder, Michelle Sie Whitten. “We are thrilled and grateful for our celebrity supporters this year, but we are especially proud to have Quincy Jones attend to support Global and present his namesake award. It’s going to be a special evening for everyone who attends and donates their time, talent and treasure as they are the people helping us change the world for good.”

Over the past 8 years, the Be Beautiful Be Yourself Fashion Show has raised more than $14 million for the Global Down Syndrome Foundation to support life-changing and life-saving research, medical care, education and advocacy. Specifically, the foundation has supported world-class multi-disciplinary medical care to more than 1,300 children with Down syndrome from 28 states and seven countries. The funding has also helped to establish the first academic home for revolutionary Down syndrome research, with a focus on Alzheimer’s disease, cancer and autoimmune disorders.

Various levels of tickets, table sponsorships, and model sponsorships are available, including VIP levels at www.bebeautifulbeyourself.org.

$2.5 million initial commitment to launch project

DENVER –The Global Down Syndrome Foundation today announced that Biogen, a neuroscience leader has joined the Global Down Syndrome Foundation and the University of Colorado School of Medicine in a groundbreaking project that explores the connection between Alzheimer’s disease and Down syndrome.

The Crnic Institute Human Trisome Project^TM (HTP) is an ambitious longitudinal and cross-sectional study that will recruit 1,000 individuals with Down syndrome (also known as Trisomy 21) and 500 typical individuals. Scientists and clinicians will sequence and study several layers of genomics information (all de-identified) from a single sample of blood. Saliva, stool and other samples are also being collected. The Crnic Institute HTP has already begun to significantly increase the speed of Down syndrome research and has enrolled nearly 300 participants in the first 11 months.

“People with Down syndrome have a different disease spectrum,” said Dr. Joaquín Espinosa, executive director of the Crnic Institute, and the principal investigator of the Crnic Institute HTP. “The Crnic Institute HTP will allow us to redefine Down syndrome from the least scientifically understood condition to one of the best understood conditions. In addition, it will provide unprecedented understanding of Alzheimer’s disease, autoimmune conditions, cancers and other medical conditions that people with Down syndrome are either very predisposed to or protected from, eventually enabling the development of new diagnostic and therapeutic tools.”

“This research will serve first and foremost people with Down syndrome, but also the millions of individuals without Down syndrome who are affected by the many medical conditions modulated by trisomy 21,” said Espinosa.

Biogen has committed more than $500,000 and additional in-kind resources to the Crnic Institute HTP to investigate the genome and epigenome of specific cell types in the blood that could inform the development of Alzheimer’s disease. This initial investment is being financed with funds from Biogen and $1 million from the University of Colorado School of Medicine at the Anschutz Medical Campus – home to the Linda Crnic Institute for Down Syndrome – with a matching gift of $1 million from the Global Down Syndrome Foundation.

“Down syndrome is still one of the least funded genetic conditions of the federal government, so we are extremely grateful for the commitment from CU and Biogen,” said Michelle Sie Whitten, president & CEO of the Global Down Syndrome Foundation. “This is just the beginning as we hope to attract other biopharmaceutical organizations and philanthropists committed to improving the lives of people with Down syndrome and other conditions.”

“The School of Medicine provides a home for outstanding biomedical research that leads to improved care for all,” said Dr. John J. Reilly, Jr., vice chancellor for health affairs and dean of the University of Colorado School of Medicine. “We are confident that this investment will have a significant impact on our understanding of the health of people with Down syndrome and that it will lead to discoveries informing the care we provide.”

“Our son is 38 years old and we are concerned that he may get Alzheimer’s,” said Jack and Penni Dorwart, whose son participated in the Crnic Institute HTP.  “We also know that if we have high- quality research that there is the potential to significantly improve not only our son’s life but millions of others with Down syndrome who have many other medical issues that prevent good quality of life. That is why we participated in this study and we encourage others to do the same. We are grateful to the Crnic Institute and the Global Down Syndrome Foundation for taking on this difficult work and advocating for our children and adults.”

Learn more about in the Crnic Institute Human Trisome Project^TM or sign up to participate in the study.

During Down Syndrome Awareness Month celebrities vow to raise awareness for life-changing research in support of the foundation’s fundraiser next month in Denver

DENVER – Tuesday, Oct. 10, 2017

Today the Global Down Syndrome Foundation announced its initial celebrity lineup for this year’s 9^th annual Be Beautiful Be Yourself Fashion Show, the single largest fundraiser for Down syndrome research in the country, which will be held on Saturday, Nov. 11, 2017 at the Sheraton Denver Downtown Hotel, 1550 Court Place in Denver.

Models with Down syndrome, such as 2017 Global Down Syndrome Foundation Ambassador Marcus Sikora, will be joined on the Be Beautiful Be Yourself Fashion Show runway by celebrities including:  Joe Manganiello, Star of True Blood and Magic Mike, Marisa Tomei, Oscar Winning Actress,  John C. McGinley, Actor, Author, Comedian and Global Board Member, and Denis O’Hare, Tony Award-winning Actor and Star of True Blood. Additional special guests will be announced in the coming weeks.

“This is a special year for Global as we have had two major scientific breakthroughs that are a direct result of the donations we have raised at our fashion show in past years,” said Global Down Syndrome Foundation President, CEO and Co-Founder, Michelle Sie Whitten. “We are thrilled to celebrate how far we have come and inspired to look towards the future in gathering additional awareness and support for a significantly better future for children and adults with Down syndrome.”

Over the past 8 years, the Be Beautiful Be Yourself Fashion Show has raised more than $14 million for the Global Down Syndrome Foundation to support life-changing and life-saving research, medical care, education and advocacy. Specifically, the foundation has supported world-class multi-disciplinary medical care to more than 1,300 children with Down syndrome from 28 states and seven countries. The funding has also helped to establish the first academic home for revolutionary Down syndrome research, with a focus on Alzheimer’s disease, cancer and autoimmune disorders.

Various levels of 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, to cover the Be Beautiful Be Yourself Fashion Show or to receive additional information and imagery, 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. Supporting the research of hundreds of scientists around the world, and through our advocates, partners and affiliates including the Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome, Global is making an impact on the lives of people with Down syndrome today, and remain focused on finding solutions tomorrow. We are committed to helping people with Down syndrome realize their fullest potential and lead healthy and productive lives. To learn more, visit www.globaldownsyndrome.org.

2017 Awardees Announced at the Annual National Down Syndrome Congress Convention in Sacramento, CA Include 9 Global Member Organizations from 8 States

On July 20, 2017 the Global Down Syndrome Foundation (Global) awarded $75,250 to 9 organizations in 8 states through itsEducational Grants program, one of two unique membership grant programs offered by Global.  The grants were announced at the NDSC Annual Convention, which attracted nearly 4,000 attendees in Sacramento, CA. To date, Global’s Educational Grants have provided $475,250 to over 50 innovative programs developed by Down syndrome organizations across the nation.

“The local Down syndrome organizations who have received our Educational Grants have made an amazing impact in their communities improving the lives of thousands of individuals with Down syndrome,” said Michelle Sie Whitten, President & CEO of Global. “We are proud to foster growth and provide resources to even more local organizations this year.”

Global’s 2017 Educational Grants fund nine programs in eight states: California, Connecticut, Delaware, Florida, New Jersey, North Carolina, Texas, and Wisconsin.

The 2017 Educational Grant recipients and their funded programs are:

Global is proud to count over 900 members made up of local, state, national, and international Down syndrome organizations. Advantages of Global membership benefits include access to two competitive grant programs: Self-Advocate Employment Initiative Grants and Educational Grants. Educational Grants up to $10K fund innovative grant programs for education professionals, self-advocates, medical professionals, parents and caregivers, and beyond.

“We are grateful for the support of the Global Down Syndrome Foundation as we continue our mission to help individuals with Down syndrome realize their full potential. This grant helps us teach and empower teens and adults with Down syndrome on business ventures, which will conclude with a showcase to highlight their micro-enterprises,” said Janet Caramello, Executive Director of the Down Syndrome Association of Central Florida.

Eligibility to be awarded Educational Grants is just one of the benefits of Global membership. To learn about other member benefits and to become a member please visit the membership page.

Contact:
Global Down Syndrome Foundation
Kathy Green
KathyGreen.Consultant@GlobalDownSyndrome.org
303 321 6277

Dr. Tom Blumenthal, former Executive Director, will continue to mentor and advise

DENVER (Jul 11, 2017) – The Linda Crnic Institute for Down Syndrome (Crnic Institute) at the Anschutz Medical Campus (AMC) names former Associate Director for Science Dr. Joaquín Espinosa as its incoming Executive Director.  In addition to his role at Crnic Institute, Dr. Espinosa is a Professor in the Department of Pharmacology at the University of Colorado Denver School of Medicine, the co-Leader of the Molecular Oncology program at the University of Colorado Cancer Center, and the founding Director of the Functional Genomics Facility at the University of Colorado.

 

Dr. Tom Blumenthal, a molecular geneticist, is stepping down as the Crnic Institute’s Executive Director but will continue to consult and advise.  Dr. Blumenthal was recruited to the institute five years ago from his post as the Chair of the Molecular, Cellular and Developmental Biology Department at the University of Colorado at Boulder.

“It was not easy to convince Tom to join us in building the first academic home for Down syndrome research in the country,” said John J. Sie, founding donor of Crnic Institute. “We knew that he was who we wanted to lead Crnic, he just didn’t know he wanted that too.”

Dr. Blumenthal was eventually persuaded and his background in both academic leadership and science enabled him to establish the Crnic Institute as the leading Down syndrome research organization nationally and globally.   He established the groundbreaking Crnic Grand Challenge grant program – a strategy he employed at his previous positions first at the AMC and then the Boulder campus of the University of Colorado to attract the best and brightest scientists.  The grant program has succeeded in attracting some of the best and brightest to Down syndrome research at the Crnic Institute, including the researcher he eventually hoped would replace him, Dr. Joaquín Espinosa.

“I was frankly surprised and delighted a couple of years ago when Joaquín agreed to become Associate Director for Science,” commented Dr. Blumenthal. “Now it just seems like a natural progression for him to take the reins.”

“Since joining the Crnic Institute and working in collaboration with the teams at the Sie Center and Global Down Syndrome Foundation I have learned so much from my colleagues and mentors including Michelle Sie Whitten and Dr. Blumenthal,” said Espinosa. “It is rare to find this perfect combination of a research institute, a clinical care operation, and a powerful non-profit agency working in close coordination toward improving the lives of people with Down syndrome. I am grateful for the opportunity to continue on the path that Dr. Blumenthal established at Crnic as its new Executive Director.”

“Tom and the people he recruits not only have brilliant minds, but brilliant hearts,” said Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “Today Tom and Joaquín have built a team of 33 labs and over 100 scientists all dedicated to improving the lives of people with Down syndrome. The actual discoveries being made – including Joaquín’s work allowing us to recast Down syndrome as an immune system disorder – is truly astonishing. And we can all thank Tom for the therapies and cures that will eventually result from the great science and medical care at the Crnic  Institute.”

Dr. Espinosa obtained his Ph.D. from the University of Buenos Aires in Argentina and did post-doctoral training at The Salk Institute for Biological Studies in La Jolla, California. In 2009, he was appointed as an Early Career Scientist of the Howard Hughes Medical Institute, a nonprofit medical research organization that plays a powerful role in advancing biomedical research and science education in the United States.  Dr. Espinosa’s current work is an ambitious, first of its kind, discovery accelerator platform call the Crnic Institute Human Trisome Project^TM that scientists believe will unearth treatments and even cures to conditions like Alzheimer’s disease, certain cancers, and auto-immune diseases that disproportionately affect the Down syndrome community.

Dr. Blumenthal will remain as a senior advisor contributing to Crnic Institute’s life-changing research and his lab focusing on RNA mechanisms will continue its valuable work while he semi-retires to spend more time with his family traveling and enjoying the Colorado outdoors.

About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation is a public nonprofit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Formally established in 2009, Global has the primary focus of supporting the Linda Crnic Institute for Down Syndrome, the first academic home in the U.S. committed to research and medical care for people with the condition, and the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado, the largest multi-disciplinary team in the U.S. providing medical care for people with Down syndrome. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal. Global organizes the Be Beautiful Be Yourself Fashion Show — the single-largest annual fundraiser benefiting people with Down syndrome. Global organizes and funds many programs and conferences, including the Dare to Play Football Camp with Ed McCaffrey, Global’s Denver Broncos Cheerleaders Dare to Cheer Camp, the Global Down Syndrome Educational Series, and the Dare to Play Soccer Camp. Global is an inclusive organization without political or religious affiliation or intention.

About the Linda Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome
The Linda Crnic Institute for Down Syndrome is the first medical and research institute with the mission to provide the best clinical care to people with Down syndrome, and to eradicate the medical and cognitive ill effects associated with the condition. Established in 2008, the Crnic Institute is a partnership between the University of Colorado School of Medicine, the University of Colorado Boulder, and Children’s Hospital Colorado. Headquartered on the Anschutz Medical Campus in Aurora, the Crnic Institute includes the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado. It partners both locally and globally to provide life-changing research and medical care for individuals with Down syndrome. The Crnic Institute is made possible by the generous support of the Anna and John J. Sie Foundation, and relies on the Global Down Syndrome Foundation for fundraising, education, awareness, and government advocacy.  It is a research and medical-based organization without political or religious affiliation or intention.

Global Livingston Institute Contact Information
Chris Callanan, +256(0) 785-919-576; chris@globallivingston.org

The Uganda Down’s Syndrome Association Contact Information
Michael Okiro, +256(0) 779-761-090; udsa.org@gmail.com

Website: www.globallivingston.org
Twitter: @listenthinkact
Facebook: www.facebook.com/globallivingston

Kamapala, Uganda – On Tuesday 21 March 2017, advocates from across Uganda will join the world in celebrating World Down Syndrome Day. Events are taking place in Entebbe, Kampala and Kabale. Together we will help raise awareness about Down syndrome and how people with Down syndrome benefit our lives and communities.

In 2011, The United Nations General Assembly declared the 21st of March World Down Syndrome Day in recognition of the 3 copies of chromosome 21 that causes the condition. While World Down Syndrome Day has been recognized widely internationally, Uganda will participate formally for the first time this year!  Celebrations are taking place as part of a growing movement to better provide resources and support for persons with Down syndrome in Uganda.

On 6 October 2016 The Global Livingston Institute (GLI) and the Global Down Syndrome Foundation (Global) announced a major joint initiative to map existing resources and services available to persons with Down syndrome, and their caretakers, living in Uganda.

This report has brought together a network of stakeholders to inform the findings. Collaborators are working together to inspire positive change for persons living with Down syndrome in Uganda. It is important to include a variety of perspectives: self-advocates, parents, caretakers, diplomats, medical professionals, civil society organizations, and government ministries; all united to better support persons with Down syndrome in Uganda.

“The Uganda Down Syndrome Association is pleased to have attracted the support of the Global Livingston institute and Global Down Syndrome Foundation in Uganda. We would like Uganda to become a Centre of Excellence for bringing services to people living with Down Syndrome. This is doable if we all put our hands and minds to it.” Michael Okiro-Emadit, Country Director, TUDSA

“The discrimination and lack of resources in Uganda can feel overwhelming sometimes, but I believe our approach is already changing lives for the better, which is something to celebrate!” said Michelle Sie Whitten, President and CEO of Global Down Syndrome Foundation.

“Collaborations like this are exactly what the Global Livingston Institute is all about”, said Jamie Van Leeuwen, Founder and CEO of the Global Livingston Institute. “We are excited to bring Global Down Syndrome and other important stakeholders to the table to improve the quality of life for countless individuals and their families in Uganda.”

To celebrate World Down Syndrome Day, events will be held in Kampala, Kabale, and Entebbe. Activities will include charity walks, receptions, health clinics, resource guides, educational seminars, and official remarks and a press briefing, in Kampala.

KAMPALA
Date/Time: Tuesday 21 March 2017; 11:00am-3:00pm
Location: Makerere University, Senate Building – Upper Conference Hall
Hosted by: Global Livingston Institute and the Uganda Down’s Syndrome Association
Contact: +256(0) 779-761-090 or +256(0) 785-919-576
Programme:
11:00   Makerere University reception
11:30   Official remarks & press brief
13:00   Educational seminar
13:30   Concluding remarks

ENTEBBE
Date/Time: Friday 24 March 2017; 8:00am-5:00pm
Location: Mayors Garden Entebbe
Hosted by: EmbraceKulture
Contact: +256(0) 759-761-165 or +256(0) 752-686-429.
Programme:
09:00   Walk/Fundraiser (Leisure Park – Mayors Garden)
10:00   Mayors Garden reception
10:30   Remarks
12:00   Health camp & entertainment
15:30   Concluding remarks

KABALE
Date/Time: Tuesday March 21st, 2017; 1pm-5pm
Location: Rutinda, Lake Bunyonyi
Hosted by: Global Livingston Institute and Entusi Resort and Retreat Center
Contact: +256(0) 787-743-201 or +256(0) 777-660-098
Programme:
13:00   Welcome & reception
13:30   Remarks
14:30   Educational seminar
13:30   Concluding remarks

About Global Livingston Institute (GLI):
The Global Livingston Institute (GLI) is a community-based research institute developing strategic partnerships in both East Africa and in the United States with a focus on education and social impact. Modeled after the Aspen Institute, GLI creates a place at the table for students and community leaders to discuss innovative complex solutions to poverty. The organization is divided into two core areas of focus: Education (Listen. Think.) and Social Impact (Act.).

The GLI currently takes nearly 200 students and community leaders to East Africa each year for university study abroad trips, high school trips, leadership conferences, youth summits, research internships, and a number of other events. The organization also employs 19 Ugandans full time to manage our East African operations.

The Global Livingston Institute has two campuses; one in the Muyenga District of Kampala in Central Uganda and our main research center in Kabale in Southern Uganda (Entusi Resort and Retreat Center). The GLI is also operating research projects in northern Uganda and has public health and education contacts throughout the country. The GLI selected Uganda and Rwanda as both countries are eager to engage in research, education and job creation opportunities. Since 2009, the GLI has developed extensive networks with the public, private and nonprofit communities in both countries.

About Global Down Syndrome Foundation (Global):
Global Down Syndrome Foundation is a public nonprofit dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Global supports two affiliates which together constitute the only academic home in the United States committed solely to research and medical care for people with Down syndrome – the Crnic Institute for Down Syndrome and the Sie Center for Down Syndrome. Global also publishes Down Syndrome World, a national award-winning quarterly magazine. For more information, visit www.globaldownsyndrome.org. Follow Global Down Syndrome Foundation on Facebook & Twitter @GDSFoundation.

About the Uganda Down’s Syndrome Association (UDSA):
The Uganda Down Syndrome Association (UDSA) is a parent-led NGO which advocates for the rights of the people with Down syndrome in Uganda. UDSA was founded by Mr. Micheal Okiro – Emadit and his wife Joyce Achom with a number of 10 children in 2005 and it was officially registered by the Uganda Government as a Non-Governmental Organisation in October 2006. The association coordinates and facilitates access to specialized Health, Educational services and skills training with special emphasis on children with Down syndrome, 20 years and below. Their ultimate goal is to construct a centre with a Health and School facility to serve the Down syndrome community in Uganda so that they can live meaningful lives as adults.

About EmbraceKulture:
EmbraceKulture works to ensure all children in Uganda are embraced and accepted for what makes them unique. EmbraceKulture works in the community to develop awareness and quality education for children with development and/or cognitive disabilities, including autism, down syndrome and cerebral palsy. Their approach focuses on empowering parents, teachers and persons with disabilities to become the agents of change. With a network of partners, they, establish parent support groups and community activism committees, foster inclusion through sports and school pairing programs, train teachers, parents and specialists and create innovative technology solutions to develop and distribute disability specific, locally relevant resource information.

DENVER (March 14, 2017) – Global’s Health and Wellness Programs hit the ground running in 2017 with a game-changing grant from the Daniels Fund for the second year. The grant will help Global improve and grow its eight life-skills programs.

Global will use this generous resource to deliver on both short and long term goals to help continue to serve people with Down syndrome at the highest level. Short term goals include implementing additional formal instructor and Pal trainings, as well as participant safety seminars at each camp. Long term goals focus on reaching new individuals with Down syndrome and to continually spread Global’s mission of improving the lives of people with Down syndrome through Research, Medical Care, Advocacy and Education.

“The Daniels Fund has offered us the opportunity to provide more individuals with Down syndrome the ability to participate in the same sports and activities as their peers,” said Michelle Sie Whitten, President and CEO of Global. “We are incredibly grateful to the Daniels Fund for supporting Global’s Health & Wellness programs again and look forward to another successful year of fun, growth, and inclusion at this year’s camp and programs.”

In 2016 the grant assisted Global’s Health and Wellness Programs in launching three new programs: Global’s Dare to Play Football and Dare to Cheer camps with the CU Buffs, and Global’s Dare to Play Tennis camp with Gates Tennis Center. These new camps were overwhelming successes with athletes with Down syndrome scrimmaging and performing at halftime of the CU Buffs Season Opener, and learning from former #1 tennis player Mats Wilander.

In 2016 participants in Global’s Health and Wellness programs increased by 61% and, thanks to the Daniels Fund, grant, quantitative participant performance evaluations were incorporated to help increase participants’ physical skill and cognitive retention.

The Daniels Fund, established by cable television pioneer Bill Daniels, is a private charitable foundation dedicated to making life better for the people of Colorado, New Mexico, Utah, and Wyoming through its grants program, scholarship program, and ethics initiative. Visit DanielsFund.org to learn more.

About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation is a public nonprofit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Formally established in 2009, Global has the primary focus of supporting the Linda Crnic Institute for Down Syndrome, the first academic home in the U.S. committed to research and medical care for people with the condition, and the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado, the largest multi-disciplinary team in the U.S. providing medical care for people with Down syndrome. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal. Global organizes the Be Beautiful Be Yourself Fashion Show — the single-largest annual fundraiser benefiting people with Down syndrome. Global organizes and funds many programs and conferences, including the Dare to Play Football Camp with Ed McCaffrey, Global’s Denver Broncos Cheerleaders Dare to Cheer Camp, the Global Down Syndrome Educational Series, and the Dare to Play Soccer Camp. Global is an inclusive organization without political or religious affiliation or intention.