Monthly Archives: May 2014

Illuminating Cognition Research “With Glow Sticks and Energy”

We recently received a message from Katie Cloutier, a junior at Black River High School in Ludlow, Vermont. Katie (on the right in the photo) held a fun-run fundraising event to support LuMind Foundation and raised almost $600 to support cognition development research. Katie, who is a distance runner, has a friend with Down syndrome and was inspired to create an event that honored her friend and her love of running.

“I chose to donate to your foundation because a close friend of mine has Down Syndrome. In my leisure time I enjoy running and have been a member of my school’s cross-country running team, so the event that I organized incorporated each of these interests, with the benefit of raising funds for beneficial research!” she explained. “I decided to host a Glow-in-the-Dark 5K run/walk on May 10th. Members of the community and people from the surrounding area came to enjoy a night run, and we lit up the village with glow sticks and energy!”

Thank you, Katie – you make us glow with happiness!

Did you miss our webinar “Down Syndrome Cognition Research: Memory and Sleep?”

Jamie EdginIn this special Mother’s Day presentation, Dr. Jamie Edgin provided an update on the current state of work on memory formation and sleep-dependent learning in children and young adults with Down syndrome. She also highlighted other recent discoveries and new directions in her lab, including progress on the development of new cognitive assessments for young children with Down syndrome (the Arizona Memory Assessment for Preschoolers and Special Populations, or A-MAP).  Learn more and watch a replay.

Ds Research Questions: Asked by a Parent, Answered by Experts

Like many parents, Victoria Vila, a freelance writer and member of the Down Syndrome Association of Greater Charlotte, had questions about research and studies on Down syndrome.

To answer those questions, she turned to LuMind’s Chief Scientific Officer Dr. Michael Harpold and Campbell Brasington, a certified genetic counselor at the Down Syndrome clinic at Levine Children’s Hospital. Then Victoria captured the answers in her blog, so she could share what she learned.

In Science of Down Syndrome, Another Piece of the Puzzle

LuMind’s Dr. Michael Harpold contributes to an article where a parent of a child with Down syndrome asks about the latest scientific studies.

Thoroughly Modern Messy

A few news articles recently reported that after studying a pair of identical twins where only one had Down syndrome, scientists in Europe determined some new information about how having Trisomy 21, a third copy of the 21st chromosome, affects a person’s genetic material. You can read the articles here and here. For a scientific take that is still fairly easy for a layperson to understand, read this one in Science Daily.

Myself and some other parents who have children with Down syndrome were unsure what this research meant and were confused by some of the wording in these articles. To decipher this for my non-scientific brain, I contacted Dr. Michael Harpold, who has more than 35 years experience as a biomedical researcher and is the chief scientific officer for LuMind Foundation (formerly the Down Syndrome Research and Treatment Foundation) the largest non-governmental source of funding in the…

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Clinical Trials UPDATE: Roche Initiates RG1662 Phase II Clinical Trials for Individuals with Down syndrome

LuMind Foundation-supported research has led to clinical trials currently in progress to address developmental cognitive deficits and those impairments associated with Alzheimer’s disease.

Roche, a leader in innovative research-focused healthcare and the world’s largest biotech company, has initiated a new multi-national Phase II clinical trial to evaluate the efficacy and safety of RG1662 in adolescents and adults, ages 12-30 years old, with Down syndrome. Following the successful completion of the previous groundbreaking Phase I clinical trial with this new drug that is being developed to address the cognitive and behavioral deficits in individuals with Down syndrome, this new significantly larger Phase II trial is a randomized, double-blind, placebo-controlled clinical study in which participants will be randomized to receive RG1662 either at low or high dose or placebo orally twice daily for 26 weeks.

This new trial, “A Study of RG1662 in Adults and Adolescents with Down Syndrome (CLEMATIS)”, will be conducted at multiple sites across the US, including La Jolla, CA, Sacramento, CA, Decatur, GA, Chicago, IL, Baltimore, MD, Boston, MA, Durham, NC, Dallas, TX, Salt Lake City, UT, and Madison, WI. In addition, the trial will be conducted at multiple international sites, including UK (4), France (4), Spain (3), Singapore (1), New Zealand (3), Canada (1), Mexico (5) and Argentina (2).

Visit our research section to learn more about the Phase II Roche clinical trial and other clinical trials.

Ryan Hartman Voted in as Vice Chairman of LuMind Foundation

Ryan HartmanLuMind Foundation is pleased to have Ryan Hartman accept the responsibility as Vice Chairman of LuMind Foundation. We are so pleased to have Ryan’s continued input and guidance with the organization.

“Like many families of children with Down syndrome, soon after our son Taylor was born, my wife and I found ourselves searching for answers on how to provide Taylor the opportunity to achieve his best. Our search for answers lead us to LuMind Foundation,” explained Ryan. “We immediately recognized the difference LuMind Foundation endeavors to make for people living with Down syndrome. I’m so very humbled and proud to be a part of a team focused on providing Taylor and others living with Down syndrome the opportunity to live a more active and independent life.”

Please join us in welcoming Ryan to his new position with the foundation.

First Annual WDSD Virtual Run/Walk

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An idea from RDS supporter Siobhan Pritchard led to the first annual Research Down Syndrome WDSD Virtual Run/Walk on March 21. Over 200 participants across the country ran or walked some variation of 3…2…1 to raise awareness of Down syndrome cognitive research and raise funds to support this remarkable medical initiative. Siobhan was assisted by other parents in organizing and promoting this campaign. Said Siobhan before the event, “I don’t care if you walk or run 321 feet, 3.21 blocks, 3.21 miles or 21 miles. I just urge parents, family, friends and supporters of persons with Down syndrome to join together on this day to showcase and support the remarkable research underway that is beginning to understand the origins of learning difficulties in persons with Down syndrome. Three separate human clinical trials are already underway to test potential drug treatments. It is so encouraging.” After the event, Siobhan added,  “Thanks to everyone across the country that participated. We all had a lot of fun!"

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Siobhan and husband Dan participated by running 21.3 miles for their event. Across the country, events were organized to celebrate WDSD. For instance, Kathy Rogers organized a 3.21 mile run in Charleston, SC, and Ida Wagner held a similar event in Huntington, West Virginia. Lara Font in Houston added a restaurant fundraiser(thank you, Victor Litwenko!) to her run. Debbie Drew ran her miles on County Road 321 in Texas. The event had international participants, including Cassie Ossorio Gonzales in a WDSD virtual run in Belgium.

The WDSD Virtual Run/Walk raised nearly $13,000 and served to promote awareness of the incredible progress of Down syndrome cognitive research. As importantly, participants were able to model and reinforce the benefits of an active lifestyle on cognitive health.

Onwards to WDSD Virtual Run/Walk 2015, and thank you, SIobhan!