Archive for 2015

December 2015 Newsletter

December 16th, 2015 by Global Down Syndrome Foundation

Colorado Gives Day, the Sie Center Draws from 27 States and 7 Countries, First National Keystone Symposia Conference on DS, Global Hires Specialist Focused on Adults with DS, Global Dancers Perform in CO Ballet’s Nutcracker and More! 

Global $100K Match

December 11th, 2015 by Global Down Syndrome Foundation

Thanks to an anonymous donor who is deeply touched by our work, we have a $100K year-end matching grant!

But we only have until midnight on December 31st to meet the match – both exciting and nerve-wracking! We will only receive a match equal to whatever we raise.

ANY amount will make a big difference and be greatly appreciated!

Your gift will be worth twice as much, but actually it will be worth more than we can ever express. Thank you and warm holiday wishes from all of us at the Global Down Syndrome Foundation.

Global Hires Specialist Focused on Adults with Down Syndrome

December 3rd, 2015 by Global Down Syndrome Foundation

In 2015 Global allocated considerable human and financial resources towards creating a multi-year plan to specifically improve the lives of adults with Down syndrome.  One important step was hiring Bryn Gelaro, LSW, a social worker who was mentored by leading experts at The Adult Down Syndrome Center at Lutheran General Hospital just outside of Chicago.

“I am so pleased to be able to continue to mentor Gelaro here at Global.  She is a rare find and truly gifted when it comes to working with our adults,” said Dr. Dennis McGuire, the co-founder of the adult center in Chicago and the co-author of “Mental Wellness of Adults with Down Syndrome” and “The Guide to Good Health for Teens and Adults with Down Syndrome.”

In Chicago Gelaro organized and managed a life-skills class for adults with Down syndrome. “There are a lot of great life-skills classes out there but there is a lack of evidence-based curriculum and tested improvement,” said Gelaro. “That’s what is exciting about working with Global – we can really address important gaps and move quickly towards improving lives.” 

Gelaro will assist with the Global Down Syndrome Foundation Educational Grant Program that currently funds nine post-secondary life-skills programs in eight states.  She will also assist Global with the following projects in 2016:

  • Helping to oversee a groundbreaking post-secondary research study
  • Assisting with the Global Adult Down Syndrome Task Force
  • Helping Dr. McGuire to organize behavioral health goals for Global’s future world-class medical center for adults with Down syndrome

“Adults with Down syndrome face so many barriers to services that could improve their happiness and well-being,” Gelaro said. “Often, our adults are not given voice. But being person-centered in our approach and in developing these programs gives them opportunities and empowers them to live full, meaningful lives.”

Gelaro received her master’s degree in social work from the University of Chicago. Prior to joining Global, Gelaro worked at the Adult Down Syndrome Center at Advocate Lutheran General Hospital in Chicago and at The Arc of Centre County in Pennsylvania. At Global, Gelaro acts as primary recruiter for the educational program in Denver.

Your year-end donation funds important Global Down Syndrome Foundation programs that support and empower adults with Down syndrome to live fulfilling lives. Click here to donate today.

Global Dancers Perform in the CO Ballet’s Nutcracker

December 1st, 2015 by Global Down Syndrome Foundation

The Colorado Ballet recently raised the curtain on its 55th annual production of “The Nutcracker.” For the fourth year in a row, dancers from the Global Down Syndrome Foundation’s Be Beautiful Be Yourself Dance Program are part of this beloved holiday tradition.

“We’re excited to have two of our dancers performing once again this year, thanks to our excellent teachers from the Colorado Ballet and Senior Physical Therapist Pat Winders from the Sie Center for Down Syndrome at Children’s Hospital Colorado,” said Allie Winter, Global’s Manager of Health and Wellness Programs. “The teachers motivate our dancers to work hard and reach their potential. The performance allows them to showcase their abilities in front of a passionate audience.”Generations of Colorado families have attended a performance of “The Nutcracker” as part of their holiday celebrations. Each year since 2012, those who have attended select shows have had the pleasure of seeing two or three of Global’s young dancers with Down syndrome show off their talents alongside professional performers and students from the Colorado Ballet Academy.

Spreading the Spirit of the Season

NutcrackerLuke and Staci

This year’s performers, Staci Unrau and Luke Lind, both age 9, participate in Global’s Be Beautiful Be Yourself Dance Program’s Ballet II class, which has continued to expand to include different levels and opportunities for the students to perform in the official production with the Colorado Ballet. In October, Staci and Luke learned they would have the opportunity to dance in “The Nutcracker.” The dancers are selected by representatives from Global, the Be Beautiful Be Yourself Dance Program instructors and the Colorado Ballet.

Eager to get on stage, Staci and Luke spent nearly two months preparing for their roles as children attending the big holiday party scene. Both dancers will participate in a matinee performance of “The Nutcracker” in early December as a rehearsal for their evening shows.

Staci will dance in the evening performance of “The Nutcracker” on Thursday, Dec. 10, and Luke will do the same on Thursday, Dec. 17. Both performances begin at 7:30 p.m. at the Denver Performing Arts Complex’s Ellie Caulkins Opera House.


The Global Down Syndrome Foundation’s health and wellness programs help children with Down syndrome pursue their passions for sports and dance. Please make a gift to support these programs.


GIVE-TODAY

For the first time in its 44-year history the Keystone Symposia is holding a national conference on Down syndrome, “Biology of Down Syndrome: Impacts Across the Biomedical Spectrum.”


KEYSTONE SYMPOSIA CONFERENCE

The conference is co-organized by Drs. Victor Tybulewicz of the Francis Crick Institute, Elizabeth Fisher of University College London Institute of Neurology, Jeanne Lawrence of the University of Massachusetts, and Tom Blumenthal of the Linda Crnic Institute for Down Syndrome at the University of Colorado. The conference will cover all aspects of Down syndrome research from genetics and cell biology as well as provide a forum to promote translation of research toward therapy. Session topics include: DS at the Cellular Level, Gene Regulation in DS, Genetics and Epidemiology of DS, Dysregulation of Cellular Pathways in DS, Cognition and Alzheimer’s Disease in DS, and Therapy – Present and Future.

“Biology of Down Syndrome: Impacts Across the Biomedical Spectrum.”

Register Now!

Tim Harris

Extraordinary restaurateur, motivational speaker and Quincy Jones Exceptional Advocacy Award recipient Tim Harris is slated to provide the opening address. Harris has garnered much attention from his successes and has appeared on CNN, Oprah, Ellen and The View.

Supporting science is one of Global’s key missions. Global and the Crnic Institute have raised $2.5 million Alzheimer’s disease-Down syndrome research and Crnic Institute grants resulting in 28 labs & 100 scientists working on Down syndrome research.

Support critical research by making a donation today!
GIVE-TODAY

Sie-Global-logos

Dr. Fran Hickeycrnic412

The Global Down Syndrome Foundation raises critical funds every year to support the excellent medical care provided at the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

The Sie Center provides the highest quality of comprehensive care to children with Down syndrome by coordinating medical care, along with therapies including speech, physical and occupational. The Sie Center serves as a resource for families and primary care doctors by providing up-to-date information while also supporting parents who have received a prenatal diagnosis of Down syndrome.

The Sie Center has treated over 1,100 unique patients with Down syndrome. The multi-disciplinary “Dream Team” of experts has more than 80 years of combined experience in caring for children with Down syndrome and developmental disabilities.

In 2015, the Sie Center expanded its staff by hiring an education specialist, psychologist and a speech language pathologist. In 2016, look for new clinics and outreach programs designed to assist even more patients and families.


This important work could not be accomplished without support of donors.
Please consider donating today.


GIVE-TODAY

Support Global for Colorado Gives Day!

November 19th, 2015 by Global Down Syndrome Foundation

Support Global for CO Gives Day!

November 18th, 2015 by Global Down Syndrome Foundation

November 2015 Newsletter

November 16th, 2015 by Global Down Syndrome Foundation

Jamie Foxx Helps Global Raise Record-Breaking $2 Million, ‘Empire’ Star and Other Celebs Rock the Runway, $1 Million in Grants for Alz Disease-DS Research, Quincy Jones Exceptional Advocacy Award Winners and More!

$1 Million in Grants for Alzheimer Disease-Down Syndrome Research

November 5th, 2015 by Global Down Syndrome Foundation

POTENTIAL “ONE-DROP” BLOOD TEST AMONG NEW PROJECTS FUNDED BY ALZHEIMER’S ASSOCIATION AND GLOBAL DOWN SYNDROME FOUNDATION

Studying Alzheimer’s in People with Down Syndrome May Accelerate Scientific Discovery

DENVER & CHICAGO, November 5, 2015 – There is increasing evidence that the brain changes of Alzheimer’s disease begin decades before memory and thinking problems occur, prompting the need for better methods of early detection for this progressive, fatal brain disease. Consequently, there is a growing school of thought that the most effective future Alzheimer’s drug therapies will be administered to those who are at high risk of the disease before cognitive symptoms appear.

Tom Blumenthal for CU Foundation
WDSD 2015 - Joaquin Espinosa with self-advocates
Sujeet Desai Tour of Crnic.

To bolster development of a simple, inexpensive, noninvasive test that can detect the risk of Alzheimer’s disease, the Alzheimer’s Association, the Crnic Institute for Down Syndrome, and the Global Down Syndrome Foundation (“Global”) are funding two studies of potential new blood tests for Alzheimer’s, including one that uses just one drop of blood:

  • One study will evaluate whether examining changes in ribonucleic acid (RNA) found in one drop of blood can accurately identify people who will develop Alzheimer’s in individuals with Down syndrome who are at high risk for the disease. The study is being led by Marwan Sabbagh, M.D., Director of the Alzheimer’s and Memory Disorders Division at the Barrow Neurological Institute in Phoenix, and Matt Huentelman, Ph.D., Associate Professor in the Neurogenomics Division Unit at the Translational Genomics Research Institute in Phoenix.
  • Another study will test whether a specific set of blood proteins can identify who is at risk for developing Alzheimer’s in a unique, high-risk population, individuals with Down syndrome. The study is being led by Nicole Schupf, Ph.D., M.P.H., Dr.Ph.H., Professor of Epidemiology at Columbia University Medical Center in New York City, and Sid O’Bryant, Ph.D., Director of the Center for Alzheimer’s and Neurodegenerative Disease Research at the University of North Texas Health Science Center in Fort Worth.

“Prevention of Alzheimer’s dementia may be more effective and easily achieved than attempting to treat the disease once symptoms already exist and irreversible damage to the brain has already occurred,” says Dean Hartley, Ph.D., Director of Science Initiatives for the Alzheimer’s Association. “For this approach to be successful, we must be able to simply and accurately assess risk early in the disease process. The Alzheimer’s Association and the Global Down Syndrome Foundation hope that these two exciting projects drive that effort forward.”

“Autopsy is still the only way to definitively diagnose Alzheimer’s disease,” said Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “If these researchers are successful we will be one step closer to catching Alzheimer’s in its early stages and hopefully then be able to treat people with the disease earlier and actually prevent dementia from occurring, when new treatment options become available.”

The grant awards are part of $1 million in new funding for Down syndrome-related Alzheimer’s disease research. Four projects will receive $250,000 each through the joint funding effort.

Nearly all adults with Down syndrome begin developing the brain changes of Alzheimer’s in their 30s. By age 55 or 60, it is estimated 55-70% will develop dementia. Because people with Down syndrome are at high risk for Alzheimer’s, answers to important research questions about the disease may be developed more quickly in this population than by studying people with sporadic, late-onset Alzheimer’s, where symptoms appear most often after age 65 – and in many cases not until the 70s or 80s.

“It used to be common for individuals with Down syndrome to die in their 30s, but because of medical advances they are now regularly living into their 50s and 60s. The irony is that they are now facing dementia due to Alzheimer’s disease,” says Huntington Potter, Ph.D., Director of Alzheimer’s Research at the Crnic Institute for Down Syndrome and a Professor of Neurology at the University of Colorado, Denver. “At the same time, questions about Alzheimer’s may be answered more quickly by studying this disease in people with Down syndrome because of their high risk for Alzheimer’s and the earlier onset. Through this approach, people with Down syndrome have the opportunity to further our understanding of Alzheimer’s disease and we have the opportunity to help this population.”

Scientists are not sure exactly why individuals with Down syndrome are at high risk for Alzheimer’s disease but past research shows that a gene on chromosome 21 codes for the amyloid precursor protein (APP) that gets cut into fragments that accumulate into the hallmark amyloid brain plaques of Alzheimer’s. People with Down syndrome are born with an extra copy of chromosome 21.

“The hope for our study is that the identification of RNA biomarkers for Alzheimer’s could be used in a non-invasive blood test that requires just one drop of blood to assess an individual’s risk of developing the disease, similar to the way a person with diabetes checks their blood sugar,” says Sabbagh. “If we can learn early on that a person is at risk, the goal would be to start preventative therapies immediately. This could be a game changer.”

“Our research could provide new information about potential biomarkers, including protein changes detected in blood, that could more accurately and easily predict the risk for Alzheimer’s disease in people with Down syndrome,” says Schupf. “If successful, we believe there is a chance that these biomarkers could also be used to assess Alzheimer’s risk in all groups of people.”

The Alzheimer’s Association is the largest nonprofit funder of Alzheimer’s research, having awarded more than $350 million to over 2,300 projects since 1982. The Association currently supports more than 350 ongoing research projects in 21 countries totaling more than $82 million.

The Global Down Syndrome Foundation raises funds for the Crnic Institute for Down Syndrome to underwrite critical research benefiting people with Down syndrome. To date, $5.7 million in research grants has been given to 33 investigators.

The two other research projects the Alzheimer’s Association and Global are funding through the joint grant award effort are:

  • A test of a potential Alzheimer’s drug treatment that reduces levels of toxic protein fragments in the brain of a mouse model of Down syndrome. The project is led by William Mobley, M.D., Ph.D., Chair of the Department of Neurosciences at the University of California, San Diego (UCSD) and Executive Director of UCSD’s Down Syndrome Center for Research and Treatment.
  • A study to determine whether a protein called Dyrk1A influences the build-up of brain proteins that lead to the formation of plaques and tangles that are key features of Alzheimer’s in a mouse model of Down syndrome. Dyrk1A is created by one of the genes on chromosome 21 and is overabundant in the brains of people with Down syndrome. The study is led by Fei Liu, Ph.D., Head of Molecular Neuroscience for the Research Foundation for Mental Hygiene, Inc. at the New York State Institute for Basic Research in Staten Island.

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 Alzheimer’s Association

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. It is the largest nonprofit funder of Alzheimer’s research. The Association’s mission is to eliminate Alzheimer’s disease through the 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. Its vision is a world without Alzheimer’s. Visit alz.org or call 800.272.3900.

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