Fashion designer Roberto Coin supports Global
January 5th, 2015 by Global Down Syndrome Foundation
through long-time Global partner Hyde Park Jewelers. A recent dinner with the famous Italian jewelry designer and thought-leader raised nearly $20,000.
Internationally renowned jewelry designer Roberto Coin lent his help to benefit the Global Down Syndrome Foundation on December 10, 2014, as long-time Global partner Hyde Park Jewelers hosted a benefit dinner.
A portion of the proceeds from the dinner, at Pasta Pasta Pasta in Denver’s Cherry Creek North, went to Global, resulting in a gift of nearly $20,000. It’s the latest contribution in a long line of support from Hyde Park Jewelers. Hyde Park owners Shereen & Michael Pollak announced at the event that Hyde Park will continue to provide marquee items for the live auction at Global’s Be Beautiful Be Yourself Fashion Show. Past live auction gems from Hyde Park Jewelers have included trips to the Kentucky Derby paired with exclusive Longines watches, and a trip to Geneva, Switzerland, paired with an exclusive timepiece from Vacheron Constantin.
Michael and Shereen Pollak with Helen Hunt
Hyde Park Jewelers is one of the top 25 independent jewelers in the nation, with headquarters in Denver and stores at Denver’s Cherry Creek Shopping Center, Las Vegas and Phoenix.
Roberto Coin is one of the most sought-after jewelry brands in the world. From the Roberto Coin website:
In 1977, Roberto Coin founded the company that would bear his name in Vicenza, the city of Gold. Initially, the company was intended for production on behalf of some of the most prestigious brands of international fine jewelry. The Roberto Coin brand was launched in 1996. Success was quick and extraordinary. By 2000, only four years after the brand’s birth, Roberto Coin positioned itself seventh amongst the best-known jewelry brands in the United States. Two years later in 2002, the brand ranked third in the international panorama and first among Italian jewelers. The headquarters is in Vicenza, Italy and is assisted by foreign branches as well as by Roberto Coin Inc. on Fifth Avenue in New York City.
Hyde Park features a Roberto Coin boutique at its Denver location and says of the jewelry: Roberto Coin jewelry was the first to make use of three color gold which rapidly became a fashionable jewelry trend worldwide. Roberto Coin designs are known for their innovative craftsmanship and trendsetting use of color, whether rose, yellow or white gold or colored gemstones. The Roberto Coin design team uses age-old jewelry design techniques with modern innovations to create his famous necklaces, earrings and more.
Global is thankful for the support of Hyde Park Jewelers and Roberto Coin and looks forward to continuing partnerships in the future.
Renowned expert Patricia C. Winders shares her views
January 4th, 2015 by Global Down Syndrome Foundation
on the Sie Center for Down Syndrome at Children’s Hospital Colorado and her hopes for children with Down syndrome
This article is an excerpt from Down Syndrome World magazine, a publication of the Global Down Syndrome Foundation. To receive Down Syndrome World, become a member of the Global Down Syndrome Foundation today at www.DownSyndromeWorld.org
Described by her colleagues as “the most respected person in the field of Down syndrome and physical therapy,” Winders belongs to a passionate team of experts and empowers thousands of children with Down syndrome. Winders, Senior Physical Therapist and Director of Therapies at the Sie Center, is a kind, patient, yet no-nonsense sort of expert. The author of “Gross Motor Skills for Children with Down Syndrome: A Guide for Parents and Professionals (Second Edition),” she has often been quoted on her philosophy: “Physical therapy is a critical service, not because it will accelerate a child’s rate of development, but because it will improve a child’s long-term functional outcome.”
Winders, who has been with the Sie Center since it opened, recently spoke about her dream job.
Q: What were your plans when you came to the Sie Center?
A: I was excited to work with a comprehensive multi-disciplinary team of professionals dedicated to children who have this condition. The vision of Anna and John J. Sie created the opportunity to have this level of collaboration of clinical care specialists to provide the best care for the children and to do clinical research.
Q: Tell us about the care team.
A: Everyone here is a professional who has chosen to specialize in working with children who have Down syndrome. When we come together to focus on one child from our varying areas of expertise, the difference we’re able to make is enormous. Improving patient outcomes through a team effort is really the future of providing total care for children with disabilities.
Q: How do you approach your specialty, physical therapy?
A: People who have Down syndrome can expect to live into their 60s, and they will need bodies that allow them to be active for that lifespan. As physical therapists, we help each child develop the body she will need as an adolescent and then as an adult. We focus on building strength, an optimal posture, and refined walking patterns. From birth to age 5, we teach gross motor skills such as rolling, sitting, crawling, walking, running, jumping, riding tricycles, and stair climbing. We want to help them develop that foundation and then use their bodies to do what they choose to do and what they love to do.
Q: What atmosphere have you created at the Sie Center?
A: We want it to be joyful. We don’t force children to practice skills if they are upset or not interested; we offer a different toy or propose a new activity they are motivated to do. We want to set them up to be successful learners. The physical space is beautiful, too. Our large motor room has a rock climbing wall and plenty of space for crawling and walking. Everybody’s eyes widen when they see it. One child stopped in the door and exclaimed, “Awesome!”
Helpful Tips from Patricia C. Winders
From “Down Syndrome Quarterly”
Follow the child’s lead
The child must be motivated to perform a particular skills. Trying to impose your will on a child with Down syndrome is a losing game. I often try to model my style of interaction after the parent’s. It is familiar to the child and most likely to be successful.
Be strategic in providing support
Children with Down syndrome tend to become quickly dependent on support. Provide as little support as possible while still allowing the child to succeed and remove the support as soon as possible.
Contact the Sie Center at 720-777-6750.
Global teams up with Alzheimer’s Association
January 2nd, 2015 by Global Down Syndrome Foundation
Awarding a total of $2.2 mil in Down syndrome-Alzheimer’s research grants. Samuel L. Jackson shares how his family has been affected by the disease
For the second year in a row, Global Down Syndrome Foundation, the Alzheimer’s Association and the Linda Crnic Institute for Down Syndrome are teaming up to to better understand the development of Alzheimer’s disease in individuals with Down syndrome and translate the research into improved treatments for people at risk to develop Alzheimer’s.
The organizations are supporting this growing area of study through a joint grant initiative called “Understanding the Development and Devising Treatments for Alzheimer’s Disease in Individuals with Down Syndrome.”
Why Down syndrome-Alzheimer’s disease research is important
One in eight older Americans suffers from Alzheimer’s disease, and 5.4 million Americans have Alzheimer’s today, with an estimated 13 million by 2050. One hundred percent of people with Down syndrome have the brain pathology of Alzheimer’s disease, and an estimated 50 percent will develop the symptoms before age 50. Recognizing that these conditions are “two sides of the same coin” and studying them together will hasten the development of new treatments for both.
The effects of Alzheimer’s are well-known, but it’s the personal stories that really make an impact. In a magazine article and video with the Hollywood Reporter, film megastar Samuel L. Jackson talks about his family’s “heartbreaking” struggle with Alzheimer’s. Read more at www.hollywoodreporter.com/news/samuel-l-jackson-opens-up-725419 and watch the video below.
2015 Research Grants
Global and the Alzheimer’s Association have already awarded $1.2 million in research grants to scientists around the world studying the connection between Down syndrome and Alzheimer’s disease, and a second round of grants, totaling $1 million, will be announced soon.
Previous Research Grants Awardees and Their Projects
In response to a Request for Application, more than 50 applications from around the world were received and vetted by the extensive peer review system at the Alzheimer’s Association with input from the Crnic Institute. The process resulted in five grants, including:
Three grants for senior investigators, each totaling $300,000:
- Investigator: Dr. Huaxi Xu, Sanford-Burnham Medical Research Institute, La Jolla, CA
Title: Roles of miR-155/C/EBPß/SNX27 pathway in Alzheimer’s disease/DS
- Investigator: Dr. Ann-Charlotte Granholm, Medical University of South Carolina, Charleston, SC
Title: Brain-derived neurotropic factor and executive dysfunction in DS
- Investigator: Dr. Karen Chang, University of Southern California, Los Angeles, CA
Title: Functional protein interactions in Alzheimer’s disease and DS
Two grants for new investigators, each totaling $150,000:
- Investigator: Dr. Donna Wilcock, University of Kentucky Research Foundation, Lexington, KY
Title: Inflammatory biomarkers to predict transition to dementia in DS
- Investigator: Dr. Eitan Okun, Bar-Ilan University, Ramat-Gan, Israel
Title: Developing a DNA vaccine for Alzheimer’s disease in patients with DS
Empowering Self-Advocates in Florida
December 30th, 2014 by Global Down Syndrome Foundation
The Down Syndrome Association of Central Florida (DSACF) was founded by a small group of families sitting around a kitchen table in 1991. Since then, DSACF’s mission of hope, encouragement, and acceptance has grown exponentially.
This article is an excerpt from Down Syndrome World magazine, a publication of the Global Down Syndrome Foundation. To receive Down Syndrome World, become a member of the Global Down Syndrome Foundation today at www.DownSyndromeWorld.org
Today, the group’s reach spans 11 countries, impacting more than 1,100 individuals who have Down syndrome, along with their loved ones and medical teams.
Growing together
In addition to year-round programming, DSACF hosts an annual Step Up for Down Syndrome walk in downtown Orlando that attracts nearly 10,000 participants.
The organization also regularly holds expert educational seminars on topics of interest to parents, such as behavior and education. As a global Down Syndrome Educational Grant recipient, it hopes to expand that work.
“The Grant helps us increase educational programming in undeserved rural areas,” said Amy Van Bergen, Executive Director of DSAF. “We’ve also begun a new course to help teach reading and other academic skills to adults with Down syndrome.” Plans are in motion to re-create the adult education track throughout the area and develop a toolkit that will allow smaller organizations to implement similar programs at little to no cost.
To donate, volunteer or learn more about DSACF, visit dsacf.org or call 407-478-5621
The Art of Activism: Raymond Hu
December 6th, 2014 by Global Down Syndrome Foundation
For San Francisco Bay Area artist Raymond Hu, 37, each brushstroke has the potential to inspire people to be better stewards of the planet.
This article is an excerpt from Down Syndrome World magazine, a publication of the Global Down Syndrome Foundation. To receive Down Syndrome World, become a member of the Global Down Syndrome Foundation today at www.DownSyndromeWorld.org
Hu was once a reluctant artist. He initially declined his father’s suggestion that he study Chinese brush painting, but when he finally relented, he was hooked. Hu began learning the medium from internationally acclaimed artist and art professor Lampo Leong in 1990. The work of Jackson Pollock and Georgia O’Keeffe also influenced the development of his style.
After experimenting with painting flowers and landscapes, Hu began creating strikingly evocative paintings of animals, particularly endangered species. The expressiveness of the creatures’ faces and eyes invites viewers to ponder their own impact on the animals’ habitats and futures.
"Cassowary" by Raymond Hu
Animals are like our friends – we have to protect them,” Hu said. “Part of the reason I paint animals is because I want people to care about them. There are many ways to be an activist. I want to encourage people to be more ecologically and environmentally mindful.”
Hu believes everyone goes through two phases in life.
“You begin as an explorer,” he said. “As you get older, you become an adventurer and begin taking risks.”
Hu’s latest adventure is portrait painting. His next may be education.
“Art is a good way to develop cognitive skills, and it’s fun,” he said. “I’ve attended several National Down Syndrome Congress Annual Conventions in the past 20 years, and I may have inspired many young adults with disabilities to enter the field of fine arts. One day I hope to become a teacher, so I can teach children about the arts and how to paint.”
Read more about Hu’s artistic methods and see more of his artwork by accessing the Down Syndrome World digital edition, available to members of the Global Down Syndrome Foundation. JOIN TODAY!
Salah Foundation grant provides $200,000 for Global
December 2nd, 2014 by Global Down Syndrome Foundation
A generous matching grant from the Salah Foundation will provide $200,000 to underwrite Global’s important new initiative for adults with Down syndrome.
Rob Shama, Fred Churbuck, Chase Turner Perry, Megan Fearnow & Dan Fearnow
The $200,000 in total matched funds allows Global to work with world-class researchers to create evidence-based educational programs for adults with Down syndrome in the areas of safety, health, nutrition, and communication & speech. Global intends to share the results of the research with the greater community in the hopes that programming that is proven will be replicated.
The Salah Foundation is a private foundation that supports nonprofit organizations in the United States that strengthen families and communities and advances individuals to become productive and responsible citizens.
The Salah Foundation’s capacity building grant of $100,000 was matched by generous supporters at Global’s Be Beautiful Be Yourself Fashion Show, where donors rallied to get the program started.
The Salah Foundation was created and funded through the generosity and lifelong success of James M. “Jim” Salah, a first generation American — son of immigrants who courageously left Lebanon and lived the American dream.
Jim Salah started his own construction business in Boston and grew it into a formidable company handling some of the city’s largest utility projects. He also ventured into real estate development and heavy equipment leasing, all while investing in nonprofit organizations and his community.
The Salah Foundation is headed by Jim Salah’s niece, Noreen Salah Burpee. Global thanks the Salah Foundation, Noreen Salah Burpee, Fred Churbuck and Megan Fearnow for understanding the impact and the capacity-building this grant has on our community, and for believing in a brighter future for our children and adults with Down syndrome.
Global will launch the evidence-based educational programs for adults with Down syndrome in 2015 in collaboration with several universities. Each quarter will touch upon one of four subjects — safety, health, nutrition, and communication & speech. With an anticipated 1:3 ratio and research collected pre-, during and post-, the goal is to provide best practices to post-secondary and life-skills programs around the country.
NIH DS-Connect registry unites Down syndrome community
December 2nd, 2014 by Global Down Syndrome Foundation
DS-Connect promises a path to research breakthroughs. If you are a parent or a guardian, help your loved one with Down syndrome and sign up now.
Sign up for DS-Connect today!
DS-Connect™: The Down Syndrome Registry is a vital new resource for people with Down syndrome, giving thousands of individuals access to a community of researchers working to improve their health and well-being.
Launched by the National Institutes of Health (NIH), the registry was first conceived in 2007 as part of the NIH’s 10-year Research Plan on Down Syndrome. Now that it has launched, DS-Connect provides a way for individuals with Down syndrome and their families to learn about, and take part in, research studies focused on related conditions such as developmental delays and congenital heart defects.
Global Down Syndrome Foundation helps lay the groundwork
The registry began to take shape in December 2010, when Global and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the NIH co-hosted the first “Down Syndrome: National Conference on Patient Registries, Research Databases and Biobanks.”
During that meeting, 70 representatives from Global, the Linda Crnic Institute for Down Syndrome, NICHD, NIH, the Centers for Disease Control and Prevention, and other non-governmental organizations met to discuss the issues and implications of creating a such patient database.
“We wanted to create tools that would facilitate research for Down syndrome,” said Melissa Parisi, M.D., Ph.D., Chief of the Intellectual and Developmental Disabilities Branch at the NICHD. “NIH and Global worked together to identify leaders in the Down syndrome community who could help with next steps in the creation of the registry.”
The conference addressed a number of crucial issues related to the creation of an online patient database, including confidentiality concerns and short-, mid- and long-term goals. The launch of the registry is the ultimate successful outcome, and thus far, over 2,000 individuals with Down syndrome have registered.
Elevating Down syndrome research to new heights
Dr. Melissa Parisi
“This is the first time the Down syndrome community has had a resource that involves active participation in medical research,” Dr. Parisi said. “DS-Connect is designed to connect them with scientists working to better understand the condition and develop treatments that will help improve their quality of life.”
People with Down syndrome are living longer now than ever before, so it has become crucial to understand the health problems within the community and how to best treat those problems.
The secure, confidential database does more than link researchers with potential study subjects, however. Families are able to access lists of specialists, such as healthcare providers with experience treating children with Down syndrome, as well as educational resources that enable them to learn more about various conditions, such as Alzheimer’s.
“This is an opportunity for these families to learn about Down syndrome, not only for their own child, but also for the broader community,” Dr. Parisi said. “But it’s also about the research community giving back.”
Sie Center’s new speech language pathologist Amanda Seligman
December 2nd, 2014 by Global Down Syndrome Foundation
The Sie Center for Down Syndrome’s new speech language pathologist Amanda Seligman shares important speech development tips for parents of children with Down syndrome.
The Sie Center for Down Syndrome at Children’s Hospital Colorado is one of the largest multi-disciplinary teams in the world providing medical care and research for children with Down syndrome.
Recently, Amanda Seligman, M.A., CCC-SLP, joined the Sie Center as the team lead for speech language pathology. Global sat down with Amanda to learn more.
To make an appointment with Amanda Seligman, please call 720-777-6750.
1. What inspired you to be part of the Sie Center?
I joined the Sie Center in December 2013. I was inspired to be a part of the Sie Center by the incredible children this clinic serves as well as the expertise and talent of the other employees who work here.
2. How did you first get involved in care for children with Down syndrome?
Way back in college, I worked at a summer camp for children who are differently-abled and there was a week for children with Down syndrome. I had so much fun that week, and it later inspired me to become motivated to work at the Rise School of Denver, an inclusive preschool that serves many families of children with Down syndrome, which eventually led to my position at the Sie Center.
3. Describe your role as a speech language pathologist at the Sie Center.
The Sie Center speech language pathologist completes speech language consultations in the Sie Center multi-discipline clinic to answer questions and provide recommendations and strategies to support families with helping their child communicate more effectively. I also provide full speech language evaluations, individual and group speech language treatment, and parent education programs.
4. What makes the Sie Center and its multi-disciplinary team so unique?
It is unique to have a center with so many excellent professionals working together to help children with Down syndrome maximize their health and potential.
5. What has been the most surprising thing you’ve discovered since starting to work at the Sie Center?
I have been surprised by the limited awareness of Down syndrome in many communities across the state.
6. What are your hopes for clinical research at the Sie Center?
Over time I hope that the Sie Center speech team will be involved in research on speech and language development and treatment for children with Down syndrome.
7. What are your long-term goals for helping improve the lives of children with Down syndrome?
Long term, I would love to see the Sie Center speech language therapy team grow both in staff, programming, and outreach to help meet the communication needs of children with Down syndrome.
8. What’s the most important thing you think parents of a child should know in terms of speech development?
It is important to create opportunities for your child to communicate throughout the day during everyday routines. Try not to anticipate your child’s needs. Instead, hold back things you know your child wants and wait to allow them an opportunity to initiate communication with you, whether they use a gesture, facial expression, sign, or word. Tune into your child’s natural communication and then model words that match their intent. For example, if your child reaches to indicate he wants his juice, say/model the word and sign, “juice.” Make sure to do this every time, in a consistent fashion. Kids with Down syndrome need lots of practice learning how to be powerful communicators, and parents can help by setting the stage for this practice.
9. Tell us a little bit about yourself.
I’m originally for Cincinnati, Ohio, and attended undergraduate school at Indiana University-Bloomington and then graduate school at CU Boulder. When I’m not busy working with children with Down syndrome, I enjoy being in the mountains, practicing and teaching yoga, and spending time with my husband, friends and family.
Learn more about the Sie Center:
For Vollbrachts, supporting Global is a family investment
December 2nd, 2014 by Global Down Syndrome Foundation
For Bill and Leslie Vollbracht, supporting the Global Down Syndrome Foundation is a family investment in their granddaughter and others who have Down syndrome.
Seasoned entrepreneurs, the Vollbrachts are betting on Global’s research, medical care and outreach. They recently sat down with Global to talk about Colorado, family and why support for Down syndrome medical care and research is so important.
1. You founded and built Land Title Guarantee Company, one of the oldest and most successful title insurance companies in Colorado. What was it like to be a Colorado pioneer?
We feel so fortunate to live in Colorado. It is where we always wanted to live and work. To have built a successful company here and to be considered Pioneers is wonderful.
2. How do you apply your business background to your philanthropic giving?
We are very lucky that Land Title was so successful. We feel that giving back to the community that made us successful is very important and something one should just do.
3. Your granddaughter Katherine Vollbracht Winfield happens to have Down syndrome. How has she changed your lives?
Kate is a wonderful little girl a real joy in our lives. We have learned that she is really just like any other child. She has good days and bad days, happy days and sad days. What we notice the most is her very strong opinions and her very heartfelt emotions. Her learning is just slower.
4. How important was the Global Down Syndrome Foundation and the Sie Center for Down Syndrome at Children’s Hospital Colorado for Katherine’s development?
The Global Down Syndrome Foundation and the Sie Center were very instrumental in Kate’s early development. They gave us and especially her parents, the Winfields, the awareness and confidence to know she could grow up and live a productive life. They stressed the importance of early intervention and inclusion and that inclusion is very possible. If Kate were to ever have a medical or social problem, the Sie Center is the place the Winfields would think of for expert and exceptional help.
5. How do you feel about your daughter and son-in-law managing the information age, work, children, and becoming advocates for people with Down syndrome?
We feel that their lives and Kirby III’s (Kate’s big brother) life is enriched by having Kate in it. Their involvement in the Down syndrome community both in Seattle and Denver is broadening their understanding of all people who are differently-abled. They will make a difference in this world.
6. What do you want people to know about Katherine?
We would like people to know that Kate is a very capable child who enjoys many things. She loves school, where she is the only child with Down syndrome in her class and has many friends. She also shows a real honesty with her feelings that some typical people have difficulty with.
7. What is the best thing about being a grandparent?
Having grandchildren is wonderful; we only wish they lived closer. Watching them grow and develop, laughing with them, talking and playing with them is a very special experience.
8. You are part of the Leadership Circle supporting Global’s marquee fundraiser and awareness-raiser – the Be Beautiful Be Yourself Fashion Show. Why should people support and attend this event?
People should support the Be Beautiful Be Yourself Fashion Show because of the numerous ways the event is creating true awareness about the world of Down syndrome. The amazing research done by the Linda Crnic Institute can be of value to not only the Down syndrome community but the entire world population.
9. What is the best advice you were ever given that you would like to pass on?
Lillian Starr, Bill’s aunt and a true pioneer in the women’s business world, gave him this advice, which he has remembered well and lived by: “Meet every commitment that you make.”
NIA announces up to $5 million to study crucial link between Alzheimer’s and Down syndrome
October 6th, 2014 by Global Down Syndrome Foundation
The National Institutes of Health (NIH) provides first request for applications specific to Down syndrome–Alzheimer’s disease research — a major step toward addressing the lack of funding for Down syndrome research.
Two institutes under NIH, the National Institute on Aging (NIA) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) recently announced an ROI research grant opportunity called Biomarkers of Alzheimer’s Disease in Down Syndrome. The goal of this funding opportunity is to enable the identification of the longitudinal progression of Alzheimer’s disease in adults with Down syndrome using clinical, cognitive, imaging, genetic and biochemical biomarkers. The $5 million grant opportunity will fund either one or two grants exploring the connection between the two conditions. The application deadline is January 12, 2015.
Global’s advocacy helps pave the way
In 2006, the Global Down Syndrome Foundation discovered Down syndrome was the least funded genetic condition by the NIH despite being the most common such condition diagnosed in the United States.
To address this, Global worked with the NICHD and co-organized the National Conference on Patient Registries, Research Databases, and Biobanks in December 2010. NICHD continues to address the lack of funding for Down syndrome and has launched an important registry tool called DS-Connect™: The Down Syndrome Registry.
In September 2012, Global and the Alzheimer’s Association organized the first-ever joint workshop bringing top scientists in the fields of Down syndrome and Alzheimer’s disease together. The workshop resulted in three significant milestones: the Down Syndrome–Alzheimer’s Disease Investigator Program which has provided $2 million in grant funding; the “Down Syndrome and Alzheimer’s Disease” Professional Interest Area at the Alzheimer’s Association that keeps research on the two conditions in the minds of decision-makers on funding; and a media spotlight on the relationship between the conditions.
Global’s advocacy efforts in Washington, D.C., has helped put Down syndrome and Alzheimer’s research at the fore. Just last month, Global arranged for Huntington Potter, Ph.D., Director of Alzheimer’s Disease Research at the Linda Crnic Institute for Down Syndrome on the Anschutz Medical Campus to address members of Congress about the importance of Down syndrome research and the potential it holds for treating or curing Alzheimer’s. Dr. Potter is the renowned scientist who discovered the mechanistic relationship between Down syndrome and Alzheimer’s, showing that Down syndrome and Alzheimer’s disease are “two sides of the same coin.”
Global’s collaboration with organizations such as the National Down Syndrome Congress, the National Down Syndrome Society, and the Alzheimer’s Association is driving the new emphasis on Down syndrome–Alzheimer’s research.
The importance of research
“Individuals with Down syndrome have been identified as high risk for developing Alzheimer’s disease,” said Melissa Parisi, M.D., Ph.D., NICHD Chief of the Intellectual and Developmental Disabilities Branch. “We want to know the biological indicators of Alzheimer’s in those with Down syndrome, as well as early signs that suggest the presence of Alzheimer’s disease so we can develop effective prevention and treatment.”
By age 40, almost all people with Down syndrome exhibit the hallmark amyloid plaques and tau tangles associated with Alzheimer’s, but only an estimated 50 percent of people with Down syndrome develop symptoms of dementia by age 50. Studying why this occurs could hold the key to finding a cure for Alzheimer’s.
At the NIA, the grants are part of the federal National Plan to Address Alzheimer’s Disease, which launched in 2012 with a goal of developing effective treatments for Alzheimer’s by 2025.
“The U.S. population as a whole is an aging society, and age is the biggest risk factor for Alzheimer’s disease,” said Laurie M. Ryan, Ph.D., NIA Chief of the Dementias of Aging Branch and Program Director of Alzheimer’s Disease Clinical Trials. “Additionally, people with Down syndrome are living longer lives and thus are becoming more affected by it.”
An estimated 5 million Americans age 65 and older are currently living with Alzheimer’s disease — and that number will only grow as baby boomers age.
Because adults with Down syndrome are at such a high risk for developing Alzheimer’s, studying how the disease develops in these individuals can provide a wealth of information.
“We want to learn as much as possible about Alzheimer’s,” Dr. Parisi said. “The partnerships formed between the community of scientific investigators, federal and private funders of research, and people with Down syndrome is incredibly important in advancing treatment options for everyone with Alzheimer’s disease.”
To learn more about or apply for the NIA/NICHD funding opportunity, click here. To take an active role in ongoing research, enroll in DS-Connect: The Down Syndrome Registry.
Watch Global’s tribute video to Senator Jerry Moran, spotlighting the importance of federal funding for Down syndrome-Alzheimer’s disease research:
LINDA CRNIC INSTITUTE FOR DOWN SYNDROME
Established in 2008, the Linda Crnic Institute for Down Syndrome is the first academic home for Down syndrome research in the United States. The mission of the Crnic Institute is to significantly improve the lives of people with Down syndrome by eradicating the medical and cognitive ill effects associated with the condition.
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