CINNCINATTI, OH (Feb 27, 2017) – Global Down Syndrome Foundation announced its second year Self-Advocate Employee Initiative Grant winners at the Down Syndrome Affiliate in Action (DSAIA) conference this weekend. Self-Advocate Employee Initiative Grants, a benefit of Global membership, empower local Down syndrome organizations to hire individuals with Down syndrome and help find sustainable funding from other sources in the future. The grants continue to expand their reach in 2017 by assisting eight Down syndrome advocacy groups employ eighteen self-advocates— in 2016 it employed fourteen. The grants will impact communities across America, with first-time winners in Olathe, KS; Omaha, NE; Grand Rapids, MI; and Richmond, VA. Returning recipients are in West Allis, WI; Tiburon, CA; Danville, CA; and Independence, OH. “We are so excited to announce the 2017 winners of the Global Self-Advocate Initiative Grants,” said president and CEO Michelle Sie Whitten. “These local organizations are working so hard to support their families and now they can also show their communities that people with Down syndrome can be productive contributing members of the work force.” The grants will help organizations hire new employees with Down syndrome, or extend employment of existing employees with Down syndrome originally made possible from previous grants that have expired. The variety of jobs self-advocates will be performing include creating social media campaigns, making signing videos, presenting interactive awareness workshops at schools , and performing and supporting administrative duties.

The Up Side of Downs of Northeast Ohio (USOD), a two-time recipient of the grant, will continue to make major strides in providing opportunities for people with Down syndrome. USOD plans to hire a self-advocate as a Retail Associate at Artful 21— USOD’s retail store that features a variety of goods made by artisans with Down syndrome and staffed by self-advocates. There is currently one self-advocate, Jake, employed in the store as a Retail Associate. The grant will help USOD employ both Jake and add another to the staff. After a productive first grant year, Down Syndrome Connection of the Bay Area (DSCBA) will employ the most self-advocates. Support from Global in 2016 allowed four associates to grow their professional and personal skills.

In 2017 the grant will continue to enable the initial four employees expand their responsibilities:

• In 2016 Eli conducted 22 ability awareness presentations in Bay Area schools reaching more than 1,000 students and nearly 70 adults – throughout different grade levels – who have a classmate with Down syndrome. As the Ability Awareness Associate, Eli’s new tasks will include participating in some DSCBA support groups and supporting the technology portion of his awareness presentations.

• Not only did Marissa become more engaged in her role as an Ambassador, but she became a master of public engagement through PowerPoint presentations and visual cues. In 2017, as the Community Outreach Associate she will create a social media campaign to give her the opportunity to use her voice creatively.

• Gaining more independence in her job tasks is one of the biggest accomplishments K. Leigh gained as the DSCBA Assistant Teacher. K. Leigh’s new tasks include leading circle time with kids, and she will be assigned specific children who she can provide one-on-one support to.

• Joseph, the Administrative Assistant, took initiative in 2016 by seeking assistance when he was stuck on tasks— like preparing mailers and medical outreach packets. As Joseph’s confidence continues to grow in 2017 his focus will include increasing his efficiency and being able to accept coaching from co-workers in a constructive and professional manner. It has been reported that those who have a co-worker with Down syndrome have higher work satisfaction levels; Global Down Syndrome Foundation hopes to spread the positive impact by supporting more people with Down syndrome in the workforce in the coming years through the annual employment initiative grants. Eligibility to win an employee initiative grant 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.

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.

Amanda Booth Joins Peyton Manning as Celebrity Model Escort; Mario Lopez set to Co-Host Nov. 12 Show in Denver

DENVER, CO (Nov. 2, 2016) – Fashion giant and online clothing retailer REVOLVE will donate all the stylish looks and apparel to be modeled at the Global Down Syndrome Foundation’s 2016 annual Be Beautiful Be Yourself fashion show on Nov. 12 in Denver. The event will showcase models with Down syndrome as they rock the runway with some of Hollywood’s top celebs and professional athletes.

“We are so grateful to Amanda and Micah Booth for helping us to find a clothing sponsor that believes in our cause,” said Global Down Syndrome Foundation President and CEO Michelle Sie Whitten. “The Be Beautiful Be Yourself fashion show will not only raise money to benefit the lives of people with Down syndrome, but it will also showcase some of the trendiest and most chic looks thanks to REVOLVE. It will be a glamorous night to remember.”

The clothing retailer, originally started by a pair of friends, has grown to now be one of the largest online shopping sites carrying over 500 brands and has regularly been featured in the media for their overwhelming success.

“We are excited to collaborate with the Global Down Syndrome Foundation and their Be Beautiful Be Yourself fashion show to support a great cause,” said REVOLVEBuying Director Lauren Yerkes. “It gives us the opportunity to support medical research and provide the models fun and great product to feel empowered when they walk the runway. I’m excited that we could showcase our entire portfolio of product, from women’s to men’s to kid’s.”

Model Amanda Booth, who has a son with Down syndrome, applauded the collaboration and REVOLVE’s charitable act.

“As a mother to a beautiful son who happens to have Down syndrome, I can tell you that there is absolutely nothing to be afraid of,” said Booth. “It doesn’t change the way I see my son and I know he’s a gift. With the leadership of Global Down Syndrome Foundation I know people with Down syndrome will be able to reach their true potential. I am touched that REVOLVE is supporting a cause that is so close to my heart.”

The Be Beautiful Be Yourself Fashion Show is the largest fundraiser for the Global Down Syndrome Foundation benefiting the Linda Crnic Institute for Down Syndrome on the Anschutz Medical Campus and the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

About the Global Down Syndrome Foundation

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 Linda Crnic Institute 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 and the Rocky Mountain Alzheimer’s Disease Center. 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.

About Down Syndrome

Down syndrome is the most commonly occurring chromosomal condition, affecting one out of every 691 live births in the U.S., according to the Centers for Disease Control and Prevention. The average lifespan is 60 years. Down syndrome is caused by the genetic condition known as trisomy 21, whereby a person is born with three copies of chromosome 21. The presence of an extra copy of the chromosome affects human development in many ways, protecting people with Down syndrome from developing some diseases, such as most tumors, while predisposing them to others, such as autoimmune disorders and Alzheimer’s disease. The reasons for this different ‘disease spectrum’ in the population with Down syndrome are unknown. Elucidating the molecular basis of this phenomenon could advance our understanding of many diseases affecting the typical population.

About REVOLVE

REVOLVE is the virtual home for an unrivaled collection of over 500 of the world’s most-coveted established and emerging brands in women’s and men’s designer apparel, shoes and accessories. REVOLVE provides the highest quality online and mobile shopping experience, serving the style-savvy consumer with impeccable customer service. Based in Los Angeles, REVOLVE’s aesthetic is deeply rooted in the Southern California lifestyle from which it was founded, where a savvy view of fashion and fun-loving attitude are infused into the entire REVOLVE customer experience. For more information please visit www.REVOLVE.com.

Media Contacts

Sunshine Sachs

Michael Samonte / Ulisses Rivera

323-822-9300

BBBY@SunshineSachs.com

Denver, Colorado (October 6, 2016) – The Global Livingston Institute (GLI) and the Global Down Syndrome Foundation (Global) announced a major joint research initiative to investigate existing resources and services in Uganda for persons with Down syndrome. The purpose of this research project is to work closely in the communities that the Global Livingston Institute serves to better understand both data and resources currently available in Uganda related to Down syndrome.

Others involved in this initiative include the Special Presidential Assistant Directorate of under privileged/disabled for the Republic of Uganda, Embrace Kulture, The Ugandan Ministry of Education – Special Needs Education, Child Fund International, The Uganda Down’s Syndrome Association, and the Honorable Consul General of the Republic of Liberia. “Collaborations like these 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 the right people to the table to address to improve the quality of life for countless individuals and their families in Uganda.”

“Global works to significantly improve the lives of all people with Down syndrome, and this is our first foray on the African continent”, said Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “Adopting the GLI mantra of listening and thinking before acting, we are confident this research project will lead to sustainable solutions to gaps in crucial services in Uganda for people with Down syndrome.”

“As members of the Global Down Syndrome Foundation, we are grateful for their important research and medical care, and we are excited to have Global and GLI working with us to directly help people with Down syndrome in Uganda,” said Michael Okiro–Emadit, Director of Uganda Down’s Syndrome Association.GLI, Global, and our Ugandan collaborators are currently assembling an advisory board that will inform this research project. One of the members of this collaborative, the Honorable Consul General Dr. Thelma Awori, remarked that “this topic is close to my heart. It is very important to me that there are services.” The Special Assistant to the President for the Republic of Uganda said that “this appointment is hard to fill. There is a lot of work to do and now there is a team to help.”

The intent of this research is also to provide a template that could be used for other communities as Global begins to look at this issue more in-depth in developing countries. 

About the Global Livingston Institute:

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 the Global Down Syndrome Foundation:

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.

Crnic Institute Associate Director, Dr. Joaquín Espinosa, Publishes Transformative Research, Provides Clear Direction for Interventions for Down Syndrome

DENVER (Sept 6, 2016) – The Global Down Syndrome Foundation has funded a landmark study led by renowned scientist, Dr. Joaquín Espinosa, Associate Director for Science at the Linda Crnic Institute for Down Syndrome. The results of the study were published online by eLife, an open-access life sciences and biomedical research journal targeted at the very high end and run by scientists including Nobel Laureate and Editor-in-Chief, Randy Schekman. The journal was established by the Howard Hughes Medical Institute, the Max Planck Society, and the Wellcome Trust.

Dr. Espinosa’s paper in eLife, “Trisomy 21 Consistently Activates the Interferon Response“, shows the unequivocal impact of trisomy 21 (the triplication of chromosome 21 that causes Down syndrome) on interferon (IFN) signaling. Specifically, cells with trisomy 21 produce high levels of interferon-stimulated genes and lower levels of genes required for protein synthesis.

Interferons are molecules produced by cells in response to viral or bacterial infection, and which act on neighboring cells to prevent the spread of the infection, shut down protein synthesis, and activate the immune system. The paper posits that if interferons are constantly activated, then the body is constantly fighting a viral infection even when such infection does not exist; this would likely cause many damaging side-effects.

Down syndrome is caused by having three copies of chromosome 21 instead of two, and since four of the six interferon receptors – the proteins that sense the presence of interferons – are encoded on chromosome 21, cells with trisomy 21 react more strongly to small amounts of interferons in their microenvironment.

Dr. Joaquín Espinosa is enthusiastic about the results of his study, “The constant activation of the Interferon response could explain many aspects of Down syndrome, such as cognitive deficit, stunted growth, increased prevalence of autoimmune disorders, high risk of Alzheimer’s disease, and protection against solid tumors.”

Dr. Kelly Sullivan, lead author of the paper, has already embarked on follow up studies. “The next steps are to fully define the role of the interferon response in the development of Down syndrome using mouse models. The great news is that FDA-approved drugs that block the interferon pathway already exist. Much clinical research will be needed to determine whether those drugs are safe over a long period and have therapeutic benefits for people with Down syndrome,” said Sullivan.

“In principle, the findings are tremendously exciting and present a novel view of some of the characteristic features associated with trisomy 21,” said Christopher Glass, MD, PhD, University of San Diego California School of Medicine, an eLife editor who reviewed Dr. Espinosa’s research.

Other scientists on the eLife review board were also impressed with the results of Dr. Espinosa’s research publicly stating: “These findings have important implications for understanding the basic nature of, and individual variation in, the diverse phenotypes of people with Down syndrome,” and “This is clearly an interesting and significant study that provides important new insights into the differences in gene expression in trisomy 21 cells.”

Dr. Espinosa’s research started with a Crnic Grand Challenge Grant organized by the Executive Director of the Crnic Institute, Dr. Tom Blumenthal. “One cannot overemphasize the importance of the funding from the Global Down Syndrome Foundation and the research being conducted at the Crnic Institute for Down Syndrome,” said Dr. Tom Blumenthal, Executive Director at the Crnic Institute. “Having attracted 30 labs and over 100 scientists, including Dr. Espinosa, we have created an incubator for accelerated research that is already pointing to discoveries that have the potential to enhance the quality of life for people with Down syndrome and millions of typical people as well.”

About the Global Down Syndrome Foundation

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 Linda Crnic Institute 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.

About Down Syndrome

Down syndrome is the most commonly occurring chromosomal condition, affecting one out of every 691 live births in the U.S., according to the Centers for Disease Control and Prevention. The average lifespan is 60 years. Down syndrome is caused by the genetic condition known as trisomy 21, whereby a person is born with three copies of chromosome 21. The presence of an extra copy of the chromosome affects human development in many ways, protecting people with Down syndrome from developing some diseases, such as most tumors, while predisposing them to others, such as autoimmune disorders and Alzheimer’s disease. The reasons for this different ‘disease spectrum’ in the population with Down syndrome are unknown. Elucidating the molecular basis of this phenomenon could advance our understanding of many diseases affecting the typical population.

MEDIA CONTACT:

Kathy Green, Global Down Syndrome Foundation
kathygreen.consultant@globaldownsyndrome.org
303 321 6277

DENVER (Aug. 26, 2016) – The National Institutes of Health (NIH) announced on Aug. 25 the appointment of Dr. Diana Bianchi as Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).

“Global looks forward to continuing to work with the NIH and NICHD under Dr. Bianchi’s leadership to advance high-impact research that will improve the lives of people with Down syndrome and all who are differently-abled,” said Michelle Sie Whitten, President and CEO of Global Down Syndrome Foundation. “Bianchi brings an impressive record of scientific achievement to her role at NICHD. Over the past two decades, her lab has advanced our community’s understanding of reproductive genetics and prenatal genomics.”

“We’re so pleased with Dr. Bianchi’s appointment and that her lab’s work will continue in the intramural program at NIH,” said Tom Blumenthal, PhD, Executive Director of the Linda Crnic Institute for Down Syndrome. “She is a distinguished medical geneticist with special expertise in reproductive genetics, and we are delighted to know that her ethical work on prenatally treating disorders and conditions will continue to lead the field.”

Bianchi will assume her new role on Oct. 31, 2016. Until that time, she remains the founding Executive Director of the Mother Infant Research Institute and Vice Chair for Pediatric Research at the Floating Hospital for Children and Tufts Medical Center in Boston.  Bianchi concurrently serves as the Natalie V. Zucker Professor of Pediatrics, Obstetrics and Gynecology at Tufts University School of Medicine.

Bianchi holds many leadership and advisory roles including serving as a member of NICHD’s National Advisory Council, President of the International Society for Prenatal Diagnosis and the Perinatal Research Society, Board of Director for the American Society for Human Genetics, council member for the Society for Pediatric Research and American Pediatric Society, and a member of the Institute of Medicine.  She has received numerous honors including the Landmark Award from the American Academy of Pediatrics in recognition for her work surrounding genetics and newborn care, and the Maureen Andrew Award for Mentoring by the Society for Pediatric Research.

As a specialist in prenatal research and Down syndrome, Bianchi has published numerous papers in journals including New England Journal of Medicine, Nature Medicine, Obstetrics and Gynecology, Prenatal Diagnosis, and was one of the authors of Fetology: Diagnosis and Management of the Fetal Patient, which won the best textbook in clinical medicine from the Association of American Publishers.

Bianchi graduated from Stanford School of Medicine, completed her residency at Boston Children’s Hospital, and finished her postdoctoral fellowship in medical genetics and neonatal-perinatal medicine at Harvard Medical School. Bianchi is board certified in pediatric, obstetrics, and gynecology, and has been issued six patents.

Global Down Syndrome Foundation is proud of its legacy of working with the leadership of NICHD and recognizes Dr. Alan Guttmacher for his years as Director, and Dr. Cathy Spong for her interim service as Director.  Global looks forward to continuing to represent the Down syndrome community as a member of the NIH’s Down Syndrome Consortium, in promoting NICHD’s DS-Connect registry, and in hosting  Congressional Briefings highlighting NIH advances made in research impacting the lives of those with Down syndrome.

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.

Contact: 

Global Down Syndrome Foundation
Taylor Shields, Senior Director of PR & Marketing
TShields@GlobalDownSyndrome.org
303 468 6061

University of Colorado Researcher Among Four to Receive Grant

Innovative Clinical Trials Competition Targets Brain Inflammation

DENVER, August 2, 2016 – The Alzheimer’s Association, in partnership with a fundraising initiative led by philanthropist Michaela “Mikey” Hoag, announces a new $7 million investment in clinical trials that target brain inflammation as an innovative avenue for Alzheimer’s disease therapy. Among the four clinical trials included in the newly-funded research is one led by noted Alzheimer’s researcher Huntington Potter, Ph.D., of the University of Colorado Anschutz Medical Campus.

The Part the Cloud Challenge on Neuroinflammation targets a critical gap in understanding and treating Alzheimer’s, and absorbs some of the financial risk associated with advancing these studies across a space in drug development where many promising ideas stall due to lack of funding. This innovative funding program is the vision of Mikey Hoag, of Atherton, California, whose family is affected by Alzheimer’s disease.

“When my father passed away with Alzheimer’s, I decided to use my personal story to rally others in support of Alzheimer’s research. When my mother started to show signs of the disease, I knew I had to kick these efforts into high gear,” said Hoag. “We hope the competition we’re creating for additional funding will speed the rate of discovery and deliver a new and effective treatment or prevention strategy to doctors’ offices and people’s medicine cabinets more quickly.”

Each study will receive $1 million to advance current research to the next stage of clinical trials. A unique, goal-driven competition offers an additional $3 million to the clinical trial that demonstrates the most promise for treating this devastating disease.

“The importance of the Part the Cloud Challenge from the Alzheimer’s Association cannot be overstated,” said Dr. Potter, who is director of the Rocky Mountain Alzheimer’s Disease Center and professor and director of Alzheimer’s disease research, Department of Neurology, Linda Crnic Institute for Down Syndrome, University of Colorado School of Medicine. “The million dollars, with a potential for another $3 million after two years, will certainly propel novel research forward towards a therapy for Alzheimer’s. For my research, the hope is that Leukine, an FDA-approved drug, may slow or even prevent the progression of Alzheimer’s disease.  That would be a home run for everyone.”

“There has not been a genuinely new Alzheimer’s drug in more than a decade, and there is currently no drug that stops or slows the progression of this devastating disease,” said Linda Mitchell, president and CEO of the Alzheimer’s Association of Colorado. “The Association’s Part the Cloud Challenge is a much-needed and inventive approach to complement mainstream drug development that we hope can change the current situation.”

Increasing evidence suggests neuroinflammation plays an important role in the brain changes that occur in Alzheimer’s and other neurodegenerative diseases. By further understanding the role and the timing of neuroinflammation and immune responses, there is an opportunity to further accelerate novel candidate Alzheimer’s therapies.

Inflammation is a natural immune system response to infection and injury where defense cells are directed to fight infection or repair damaged tissue. However, persistent or misdirected inflammation can damage otherwise healthy tissue, such as the destruction of joint cartilage that occurs in arthritis or nerve damage in multiple sclerosis. Similarly, inflammation in the brain may help protect it from harm, such as the formation of the hallmark amyloid plaques of Alzheimer’s, but too much inflammation may damage the brain’s delicate nerve cells and intricate connections.

The four selected projects will receive $1 million over two years for either a Phase I or Phase II trial. Projects will be evaluated for their ability to advance in human testing, such as being safe for use in people and the ability to influence the underlying biological process they are meant to target. The project that demonstrates the most viable translation to advanced clinical trials will be eligible to receive an additional award of up to $3 million to further therapy development. Three of the four studies are testing potential therapies developed for other conditions that are being repurposed for Alzheimer’s.

“This funding from the Alzheimer’s Association is a testament to the incredible potential that Dr. Potter’s work holds for the future,” said CU Anschutz Medical Campus Chancellor Donald M. Elliman, Jr. “As the director of the Rocky Mountain Alzheimer’s Disease Center, he is ideally positioned to bring together teams of the brightest minds in medicine across the University of Colorado system to unravel the mysteries of Alzheimer’s disease. This generous investment will accelerate Dr. Potter’s work, bringing us closer to novel therapies that could impact countless lives in Colorado and around the world.”

“I believe we have the brightest, most hard working scientists who also have huge hearts for our families,” said Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation – an affiliate of the Linda Crnic Institute for Down Syndrome. “We are so pleased Dr. Potter has received $1 million from the Alzheimer’s Association to advance his research.  His work is shining a light on the link between Down syndrome and Alzheimer’s disease, and his team is focused on several innovative paths towards better treating and preventing Alzheimer’s.”

The funded projects are:

• A Phase II clinical trial of the FDA-approved drug Leukine, to determine whether it is safe and can help slow or prevent the progression of Alzheimer’s, led by Huntington Potter, Ph.D., Professor and Director of Alzheimer’s disease research, Department of Neurology, Linda Crnic Institute for Down syndrome, University of Colorado Anschutz Medical Campus. Leukine is approved for reducing and preventing infection in people who have received chemotherapy.
• A Phase II clinical trial to determine if the drug Sativex, a cannabis-based liquid medication that was previously tested for the alleviation of cancer-related pain, reduces brain inflammation and helps slow the progression to Alzheimer’s disease in people with mild cognitive impairment, led by Isidro Ferrer, M.D., Ph.D., Coordinator of the group Neuropathology at CIBERNED (Network Center for Biomedical Research in Neurodegenerative Diseases), Institute of Health Carlos III, Barcelona, Spain.
• A study to test if treatment with the drug Senicapoc can reduce brain inflammation, alter the rate of brain amyloid accumulation, and improve memory in people with early Alzheimer’s disease or mild cognitive impairment. In previous research, a drug similar to Senicapoc helped to reduce brain inflammation, prevent nerve cell damage, and improve memory in mice with an Alzheimer’s-like condition. The project includes a Phase II clinical trial led by John Olichney, M.D., Professor and Neurologist at the University of California, Davis. Senicapoc has been shown to be safe in clinical trials of sickle cell anemia and asthma, but has yet to be tested in people with Alzheimer’s.
• A Phase I clinical trial to examine the safety and efficacy to reduce brain inflammation of a novel therapy manufactured by Longeveron LLC using stem cells derived from healthy adult donors and that are delivered into the bloodstream of people with mild Alzheimer’s disease. Anthony Oliva, Ph.D., senior scientist at Longeveron, will serve as principal investigator, and Bernard Baumel, M.D., will serve as the clinical investigator of the trial at the University of Miami Miller School of Medicine. Longeveron is a life sciences company located in Miami, Florida. In past research, this type of stem cell has demonstrated the ability to target and reduce inflammation, promote tissue repair, and improve brain function in mouse models of Alzheimer’s disease.

Individuals interested in applying to participate in the research should register for the Alzheimer’s Association’s TrialMatch program or call the Association’s 24/7 Helpline at 800-272-3900.

More About Part The Cloud

With 100 percent of the proceeds from Part the Cloud going directly to Alzheimer’s Association research support, and a focus on moving promising laboratory research into early stage clinical trials, Part the Cloud is unique in that it is the only Alzheimer’s Association grant program that awards funding to individual researchers and companies.

Hoag’s efforts in partnership with the Alzheimer’s Association, including the Part the Cloud Challenge on Neuroinflammation, have raised more than $17 million for Alzheimer’s research with the help of more than 300 donors – many of them leaders in the technology industry in California’s Silicon Valley. Funding from Part the Cloud is focused on moving promising laboratory research into early-stage human clinical trials. It supports both academic and company-based research; 100 percent of the proceeds from Part the Cloud go directly to Alzheimer’s Association-supported research.

About the Alzheimer’s Association

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s research, care and support. Our mission is to eliminate Alzheimer’s disease through advancement of research, to provide and enhance care and support for all affected, and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit alz.org or call 800-272-3900.

CONTACT:

Jim Herlihy, Alzheimer’s Association of Colorado (303) 813-1669 – jherlihy@alz.org

Nathan Gill, University of Colorado Anschutz Medical Campus (303) 319-5073 – nathan.gill@ucdenver.edu

Taylor Shields, Global Down Syndrome Foundation (303) 468-4975 – tshields@globaldownsyndrome.org

2016 Awardees Include Global Member Organizations from Eleven States 

ORLANDO (July 21, 2016) – Today, the Global Down Syndrome Foundation (Global) awarded $92,200 to organizations in eleven states through one of Global’s membership grant programs.  The grants were announced at the NDSC Annual Convention which attracted nearly 4,000 attendees in Orlando, FL. To date, Global’s membership Educational Grant program has provided $400,000 to over 40 Down syndrome organizations across the nation.

Global is proud to count 835 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 Gants up to $10K fund innovative grant programs for education professionals, self-advocates, medical professionals, parents and caregivers, and beyond.

“The local Down syndrome organizations we provide grants to are our heroes,” said Michelle Sie Whitten, President & CEO of Global. “They are on the front line educating self-advocates, families and professionals in their communities, and Global is very proud to be able to assist with this important work through our membership grant programs.  We are also pleased to be able to use our Global membership dues this year and fund a record-breaking number of innovative educational programs from member organizations across the country.”

Global’s 2016 Educational Grants fund programs in eleven states: Arizona, California, Florida, Kentucky, Nebraska, New Mexico, New York, North Carolina, North Dakota, Ohio, and Wisconsin. 

The 2016 Educational Grant recipients and their funded programs are:

1. Phoenix Children’s Hospital Foundation (Phoenix, AZ)
   “Family Education Events through the Pediatric Down Syndrome Clinic” will be a monthly workshop lead by the medical team at the clinic to educate parents and family members of children with Down syndrome to better understand their medical needs, discuss at-home care, and navigate the state education system to obtain education resources.
2. Down Syndrome Connection of the Bay Area (Danville, CA)
   “Future Connections” is a tool designed to assist adolescents and young adults with Down syndrome in identifying their preferences, interests, and needs. It is intended to be used in collaboration with families and caregivers in order to implement effective life planning.
3. Gold Coast Down Syndrome Organization (Boynton Beach, FL)
   “Best Start” is a year-long weekly education workshop for parents and children. Separated into two distinct sessions, the program will give self-advocates and parents the tools to aid them in academic, social, communication, creative, and personal success.
4. Down Syndrome Association of Central Kentucky (Lexington, KY)
   “DSACK Learning Program Level 2” will expand their current Learning Program to serve older students ages 8-12 and their parents. The Learning Program is parent/child focused and empowers parents to teach their children literacy, math, and other skills.
5. Down Syndrome Association for Families of Nebraska (Lincoln, NE)
   “DSAF of Nebraska 2016 Educational Conference” provides accurate and up to date information on best practices in the field of Down syndrome to parents, educators, medical professionals, and direct service professionals across the state of Nebraska annually, with a focus on education and behavior in children with Down syndrome.
6. Down Syndrome Foundation of Southeastern New Mexico (Roswell, NM)
   “Down Syndrome Education & Medical Conference” will enlighten and educate the community about available research and medical care, and connect parents and medical professionals. This will extend upon their current annual conference and allow them to bring in medical professionals as speakers and panelists.
7. Down Syndrome Association of Hudson Valley  (Hopewell Junction, NY)
   “BEST: Behavioral Education Support Team” is a workshop and home based therapy program to educate parents and caregivers on the value of teaching appropriate behavior to children with Down syndrome with the assistance of Applied Behavior Analysis.
8. Down Syndrome Association of Greater Charlotte (Charlotte, NC)
   “DSAGC Together in Education” is a two component program with an in-school portion providing training, support, and resources to Down syndrome specialists in the Greater Charlotte school districts, and a two-day conference for educators, service providers, and families.
9. Designer Genes of North Dakota (Bismarck, ND)
   “Pathfinder Parent Involvement Conference” will collaborate with Pathfinder Services of North Dakota to add a specific track to educate families and medical professionals about issues relating to school-aged individuals with Down syndrome during their annual conference.
10. Down Syndrome Association of Central Ohio (Columbus, OH)
    “The Learning Program Online” will expand the current online Learning Program to a full year and add a second level for school-aged children with Down syndrome and their parents.
11. Down Syndrome Association of Wisconsin (St. Francis, WI)
    “Young Leaders Academy” is a program designed to help teens and young adults with Down syndrome build skills that lead to employment readiness and the ability to live and work independently in the community.

“The national recognition of the Educational Grants from the Global Down Syndrome Foundation allows local Down syndrome organizations like ours to promote and showcase the program as not only a collaboration with our school districts and medical professionals but also with national partners,” said Terri Harmon, Executive Director of Gold Coast Down Syndrome Organization.

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.

Research focused on the immune system could explain increased risk of leukemia, autoimmune disorders, and cognitive impairment

DENVER, CO (March 18, 2016) – Global Down Syndrome Foundation kicked off the weekend of World Down Syndrome Day by announcing $1M in funding for eleven new studies at Crnic Institute for Down Syndrome, and three new clinics at the Anna and John J. Sie Center for Down Syndrome inside Children’s Hospital Colorado.

“One cannot overemphasize the importance of the diversity in this research,” said Dr. Tom Blumenthal, Executive Director at the Crnic Institute. “The potential findings on the horizon from this research, made possible by funding from Global, may play a role in significant discoveries leading to an enhanced quality of life for those with Down syndrome that could possible benefit the typical population as well.”

The Global Down Syndrome Foundation raises funds for the Linda Crnic Institute for Down Syndrome, the leader in Down syndrome research, to underwrite critical investigations benefiting people with Down syndrome. To date, Crnic Grand Challenge Grants have awarded $6.7 million in research grants to 33 investigators in 100 dedicated labs. Four of the 2016 grant recipients will focus on the immune system; increasing evidence suggests that malfunction of the immune system in people with Down syndrome may be linked to their higher risk for leukemia, autoimmune disorders, and cognitive impairment.

•  Brianne Bettcher, Ph.D., Assistant Professor of Neurosurgery at the University of Colorado School of Medicine on the Anschutz Medical Campus will investigate the correlation between biomarkers of inflammation, brain structure, and neuropsychological functioning in adults with Down syndrome with an emphasis on those with early stages of Alzheimer’s disease.

•  Steven Maier, Ph.D., Distinguished Professor of Psychology and Neurosciences at the University of Colorado Boulder will test the impact of anti-inflammatory therapies on learning and behavior using a mouse model of Down syndrome.

•  Christopher Porter, M.D., Associate Professor of Hematology, Oncology and Bone Marrow Transplant in the Department of Pediatrics at the University of Colorado School of Medicine and in the Center for Cancer and Blood Disorders at Children’s Hospital Colorado will employ advanced technology to define, with unprecedented detail, the impact of trisomy 21 on the amount and function of the many types of immune cells in the human body.

•  Kelly Sullivan, Ph.D., Instructor in the Department of Pharmacology, University of Colorado School of Medicine on the Anschutz Medical Campus will focus on a specific group of proteins, known as Interferons, which play potent and widespread roles in the immune system. This research will define the impact of modulating Interferon activity on cells from individuals with trisomy 21.

A full list of current and previous grant recipients and descriptions of the research is available at globaldownsyndrome.org/crnicgrants.

“Global is incredibly proud to contribute to the Down syndrome community in both the areas of research and care. Crnic, the only academic home for research specific to Down syndrome, has already established a leadership role in Down syndrome and Alzheimer’s research and will continue in that role with this research,” said Michelle Sie Whitten, President and CEO of Global Down Syndrome Foundation. “The additional clinics at Sie Center will provide even more resources contributing to comprehensive care and support for patients and their families.”

The Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado, also funded by Global, has a roster of some of the most accomplished medical professionals in their field specializing in treating patients with Down syndrome. In an effort to provide patients with the best care available, the Sie Center will introduce three new clinics in 2016 including a telemedicine clinic, an infant clinic and an education clinic.

“The Sie center provides the best care available for children and adolescents with Down syndrome, all contained inside Children’s Hospital Colorado,” said Sie Center Medical Director Dr. Francis J. Hickey. “We strive to provide impactful strategies that our patients can draw on to continually improve their lives, even after their Center visit concludes. The education clinic will work with students, parents, and educators to ensure each student can be as successful in their education as possible.”

The education clinic is remarkable in that it is the first education clinic devoted to people with Down syndrome that has a full time education specialist. Alissa Beck, the new Education Specialist, is tasked with working with patients to improve education performance, self-esteem, and socialization skills to thereby improve quality of life. Children and young adults with Down syndrome benefit from inclusion, differentiation, support and compassion; the education clinic will emphasize these while working with schools to maximize the student’s academic experience and success.

Down syndrome is the most commonly occurring chromosomal condition, affecting one out of every 691 live births in the U.S., according to the Centers for Disease Control and Prevention. Because of the end of widespread institutionalization, better medical care, improved access to education and greater societal inclusion, people with Down syndrome are living longer and more productive lives, with the average life span increasing from 25 years in 1983 to 60 years today. To contribute to the Global Down Syndrome Foundation mission or learn more please visit GlobalDownSyndrome.org.

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About Global Down Syndrome Foundation
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 Linda Crnic Institute 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.

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MEDIA CONTACT:
Taylor Shields, Global Down Syndrome Foundation
303 468 4975
TShields@GlobalDownSyndrome.org

 

 
 

Dr. Barry Martin, an expert in treating adults with Down syndrome, examines self-advocate Jeff

Denver, CO (March 8, 2016) — Global Down Syndrome Foundation announced that it will produce and publish Medical Care Guidelines for Adults with Down Syndrome. The guidelines, unveiled at the Down Syndrome Affiliates in Action Conference (DSAIA) in Charlotte, NC, will be a community resource with support from Down syndrome organizations in the United States and vetted by a national clearing house for healthcare guidelines.

In Charlotte, eight local Down syndrome organizations pledged $12,000 to support Global Down Syndrome Foundation’s plan.  It is anticipated that additional Down syndrome organizations and foundations will join in support.  The pledges help offset the significant costs associated with creating, vetting, and publishing the guidelines.  The guidelines will be written and published over an 18 month period with the help of a professional working group including Down syndrome medical experts.  The published guidelines will be offered at no cost to self-advocates, physicians, family members, caretakers, and Down syndrome organizations locally, regionally, and nationally.

“Having accurate, updated medical care guidelines for adults with Down syndrome is critical to the long-term health of every person in our community,” said Robbin Thomas Lyons, president of Wisconsin Upside Down.  “We commend and wholeheartedly support Global for taking on this important work.”

Dr. Dennis McGuire, Global’s award-winning behavioral health specialist and author, with self-advocates at the Spring 2015 Educational Series

The most recent guidelines for adults with Down syndrome were published in 2001 and the fifteen years since have been marked with many advancements in the areas of medical care and research surrounding Down syndrome.  Most notably, the life expectancy for someone born with Down syndrome has more than doubled since 1983, from 25 years to 60 years today.   With this dramatic advancement, the Down syndrome community faces new challenges including dementia and Alzheimer’s disease, which is estimated to affect over fifty percent of people with Down syndrome and at a younger age than in the typical population.  

Self-advocate Shima works to stay healthy

The ultimate aim of the guidelines is to improve the quality of care and outcomes for adults with Down syndrome.  To this end, the guidelines will develop statements to help clinicians and patients decide on appropriate healthcare for specific clinical conditions and situations.

“We have spent a lot of time and resources researching the best way to go about doing this, and we are so pleased to be able to start this important work with the support of DSAIA and so many local Down syndrome organizations,” said Michelle Sie Whitten, President and CEO of Global Down Syndrome Foundation.

About the Global Down Syndrome Foundation
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.

MEDIA CONTACT:
Taylor Shields, Global Down Syndrome Foundation
303 468 4975
TShields@GlobalDownSyndrome.org

Recipients includes eight organizations in seven states

CHARLOTTE, NC (March 4, 2016) – Today, during the Down Syndrome Affiliate in Action (DSAIA) conference, Global Down Syndrome Foundation announced the winners of its first annual Employment Initiative Grant. These grants will empower local Down syndrome organizations to hire individuals with Down syndrome and to help attract sustainable funding from other sources in the future.

“We are pleased to announce such worthy winners of Global Down Syndrome Foundation’s first ever Employment Initiative Grant,” said president and CEO Michelle Sie Whitten. “With the great work that each of these organizations tackle I look forward to continuing to create further employment opportunities for people with Down syndrome.”

The Self-Advocate Employment Initiative grants will impact communities across America, with winners from Down syndrome advocacy groups in Danville, CA; Independence, OH; Tiburon, CA; St. Francis, WI; Danville, CA; Memphis, TN; Roswell, NM; Ewing, NJ; and Boynton Beach, FL. In its inaugural year, recipients will use the grant to hire new employees with Down syndrome, or continue employment of existing employees with Down syndrome originally made possible from previous grants that have since expired. Self-advocates will be performing a variety of jobs including medical advocacy, landscaping, conducting ability awareness workshops at schools, and teaching sign language. In total, this grant program will support the employment of fourteen self-advocates in 2016.

Using the grant to support the most self-advocates of all the winners is Down Syndrome Connection of the Bay Area (DSCBA). This grant will help to increase the hours of four already employed self-advocates:

• Eli has worked with DSCBA since 2009 when he and classmates first created a presentation to teach school children how to include, respect, and support individuals with Down syndrome. He has since given this presentation to classes from kindergarten through college and also volunteers in a 1^st grade classroom and with Meals on Wheels.
• Between volunteering at his local library twice a week and serving as an usher at his church, Joseph supports the DSCBA headquarters as an administrative assistant, which helps him live in his own apartment. 
• Marissa’s 2-year postsecondary work with the Wayfinders Program at California State University in Fresno has equipped her to serve as a teaching assistant at an early education center, operations and event assistant at an event center, assistant food server, and DSCBA’s Community Outreach Associate.
• K. Leigh balances two jobs, one as a teaching aid for children with disabilities, which she enjoys because the “kids are loveable, make [her] happy, and are so fun.” She has played clarinet for twe
  nty years and performs for her DSCBA colleagues at each year’s holiday party.

“This grant will enable Down Syndrome Connection of the Bay Area to increase the hours, thereby income, of four individuals in our community with Down syndrome,” said executive director Nancy Labelle. “This is another great example of the benefits we receive as an official member of the Global Down Syndrome Foundation.”

On the other end of the spectrum, Down Syndrome Association of Central New Jersey will make major strides as the grant from Global will not only allow them to hire their first employee with Down syndrome, but their first employee overall; currently, they are purely volunteer based. This employee will join medical advocacy campaigns, help plan events, and be responsible for periodically self-ranking their performance as part of the review process.

“The Down Syndrome Association of Central New Jersey is especially appreciative of this grant as we are a small organization with big goals,” said president Melissa Burgos. “We’re excited to hire our first employee with Down syndrome and about the impact he or she will have on our work.”

It has been reported that those who have a co-worker with Down syndrome have higher work satisfaction levels; Global Down Syndrome Foundation hopes to spread the positive impact by supporting more people with Down syndrome in the workforce in the coming years through the annual employment initiative grants. Eligibility to receive an employment initiative grant 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.