The LuMind IDSC Foundation Family Weekend provides families an opportunity to connect and meet other families with a loved one with Down syndrome while individuals with Down syndrome experience a fun-filled weekend amongst their friends.
We hope you will join us for the 2019 Family Weekend! 2018 was our largest Family Weekend yet with over 900 families that joined us at 17 Great Wolf Lodge locations – 16 in the United States and 1 in Canada. We anticipate an even larger turnout for 2019!
Visit the event page for more details, www.lumindidsc.org/2019familyweekend.
September 27, 2019
Bull Run Golf Club
Please join us for the 9th Annual Ashley Rose Classic to benefit the LuMind IDSC Foundation on September 27, 2019 (Shotgun Start 9:00am). The LuMind IDSC is a charitable organization whose mission is to stimulate biomedical research that will accelerate the development of treatments to significantly improve cognition, including memory, learning and speech, for individuals with Down syndrome in order that they:
• participate more successfully in school;
• lead more active and independent lives;
• and avoid the early onset of Alzheimer’s Disease.
We will have a great day of golf at the beautiful Bull Run Golf Club in Haymarket, VA (www.golfbullrun.com). The event will include the following:
- 4-person scramble
- Continental Breakfast
- Box Lunch
- Beverage Cart
- Putting Challenge
- Longest Drive Prize
- Closest to the Pin Prize
- Cocktail Hour
- Awards Dinner
- 50-50 Raffle
- 1st and 2nd place prizes
- Silent Auction
Special Offer: Included with your online registration is a 1-year subscription to Golf Digest (a $10 value). Click here for offer and refund details.
“The National Institutes of Health (NIH) has a longstanding program of research in Down syndrome (DS) to improve the quality of life for those with DS. In fiscal year (FY) 2018, in response to a Congressional directive, NIH launched a new DS research initiative called INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE).
The INCLUDE project (https://www.nih.gov/include-project), is addressing critical health and quality-of-life needs for individuals with DS, focusing on co-occurring conditions, such as Alzheimer’s disease, cancer, cardiovascular disease, immune system dysregulation, and autism, among others. NIH dedicated an additional $22.7 million for INCLUDE research in FY2018, bolstering total funding for DS research to $60 million last year. NIH Staff will provide updates on DS research funding in FY2019, highlighting some of the new INCLUDE projects.
In addition, NIH supports DS-Connect®: The Down Syndrome Registry(https://DSConnect.nih.gov), an online resource which collects basic health information about people with DS and connects them with research opportunities of interest to them. NIH Staff will describe how families can join DS-Connect and participate in INCLUDE-related research projects. In this way, families can help us better understand DS and develop effective treatments for DS-related conditions by being part of DS-Connect and informing researchers about the issues that matter to them.”
The webinar is at 12 pm ET, 11 am CT, 10 am MT, 9 am PT on Friday, Sept. 27.
Presenter: Leonard Abbeduto, PhD, is the Director of the UC Davis MIND Institute, the Tsakopoulos-Vismara Endowed Chair, and Professor of Psychiatry and Behavioral Sciences at the University of California, Davis. Dr. Abbeduto’s research is focused broadly on the development of language across the lifespan in individuals with neurodevelopmental disorders and the family context for language development. Dr. Abbeduto has published more than 190 articles, chapters, reviews, and books on Down syndrome, fragile X syndrome, autism, intellectual disabilities, and child development. His current research is focused on understanding variation in language outcomes in various neurodevelopmental disabilities, the measurement of treatment effects in clinical trials, and the use of distance technology in behavioral treatment. He serves as director of the NICHD-funded MIND Institute Intellectual and Developmental Disabilities Research Center. Dr. Abbeduto has received numerous awards, including the Steiger Award for Distinguished Teaching from the University of Wisconsin-Madison, the Faculty Stewardship Award from the University of California, Davis, the Enid and William Rosen Research Award from the National Fragile X Foundation, and the Edgar Doll Award for Distinguished Research Contributions from Division 33 of the American Psychological Association. He earned his PhD in psychology from the University of Illinois at Chicago in 1982.
Chicago is one of the world’s most popular marathons and LuMind IDSC has a full team!!!
Visit our Crowdrise page to read the stories on why they run or to donate to the LuMind IDSC team to help raise money to support Down syndrome research.
If you received your own entry to the 2019 Chicago Marathon but still want to fundraise with our team email email@example.com. Didn’t get in this year fill out the following survey to submit your entry for 2020!!
Join LuMind IDSC at the 34th DS ACT Convention on October 19th at the
Water’s Edge Resort and Spa
Stop by our booth to learn more about the exciting research that is getting closer to clinical trials and the new LuMind IDSC initiatives for the Down syndrome community.
James Hendrix, Ph.D., will also be speaking at the social hour at 3:45. Dr. Hendix will be presenting on how the momentum around research for Down syndrome has grown dramatically in recent years. The NIH, the pharmaceutical industry, researchers and clinicians, research-focused foundations, and families are increasingly rallying behind research to spur new treatment options for our loved ones with Down syndrome. There are many novel, promising activities in Alzheimer’s disease, sleep apnea, autoimmune conditions and more. We are entering a time where families and affiliates are now adding research to their most important topics along with education, early intervention inclusion, and advocacy.
He will also provide an update on some research advances, including work supported by the LuMind IDSC Foundation. He will also share reasons and resources for families to rally behind Down syndrome research. Dr. Hendrix is also happy to take questions on Down syndrome research.
To find out more information about the conference, go to the DS ACT website at mydsact.org Our thanks to DS ACT for inviting LuMind IDSC and for the conference committee for their exceptional work organizing this conference.
Thank you to the LuMind IDSC Team who are running at the New York City Marathon on November 3th!
Come down to our cheering station and cheer our runners on please email firstname.lastname@example.org to get more information.