2018 NDSC Conference
July 12-15, 2018
Sheraton Dallas Hotel
LuMind RDS is proud to be a Wrangler sponsor of the 2018 NDSC Conference. We are looking forward to reuniting with family and friends on July 12th in Dallas to continue collaborating in our shared goals of improving health and independence in individuals with Down syndrome. Swing by the LuMindRDS Booth located at Booth 6 to learn more about the exciting research that is getting closer to clinical trials and the new LuMind RDS initiatives for the Down syndrome community.
Come join us at Miles for Breakthroughs 5k run/walk at Trinity Skyline Trail July 14th @ 7:30am. To register or donate Click Here
To find out more information about the conference go to the NDSC website. Our thanks to NDSC and the conference committee for their exceptional work organizing this important meeting.
The LuMind Research Down Syndrome Foundation and The Bags 4 Breakthroughs Committee invite you to kick off the first Bags for BREAKTHROUGHS Cornhole Tournament.
August 4th Doors Open at 4pm
Scarlet Lane Brewing Company
Team Registration and Sponsorship Info:
|We’ll start with a round robin at 5 pm then play for prizes in winner/loser brackets. Both amateur/casual and pro/expert players are welcome.|
|Food and beverages will be available for purchase. Scarlet Lane Brewing will donate a portion of there proceeds that day to LuMindRDS.|
|Don’t have to throw the bags to join in on the food, beer and music. Come down and cheer on the teams and enter in to win one of our spectacular items!!!
You will be missing out but if you have made other summer plans you can still participate by DONATING. Just click here to help fund research for individuals with Down syndrome
Research and Retreat Weekend 2018
One weekend, one location, lots of families, activities, learning and fun– all the weekend of
August 9-12, 2018 at the Cincinnati Great Wolf Lodge!
Watch this live webinar on Parental Perspectives on Down Syndrome Research and 5 Ways to Rally for Research with Nicole White, PhD Candidate, Antioch University
August 30, 2018
Register at http://bit.ly/DsFamilySurvey
Join LuMind RDS & DSDN
and light up the night with us at the 2018 ROCKIN’ IT Run 5K.
Rockin’ It Run 5K
JW Marriott Desert Ridge Phoenix, AZ
Thursday, Sept. 6, 2018
Runners and walkers are welcome for an evening filled with glow sticks, dunk tank, auction items – and great music for a great cause. You will be joining a vibrant community of runners who are friends and family of a loved one with Down syndrome – or who just enjoy running for a great cause! For more information on sponsorship or attending this event please contact Katie Coughlin.
Regression: Understanding a sudden loss of skills in children or young adults with Down syndrome.
September 18, 2018
Registration link: http://bit.ly/RegressionAndDs
Regression is an unusual loss of previously acquired functional skills along with significant changes in behavior and personality. When it occurs, it most commonly occurs in teens and young adults but may occur in younger and older ages. Learn more about the known signs, causes or triggers and current research from two leading clinical experts, Drs. George Capone and Brian Chicoine, with over 20 years of experience providing medical care for children and adults with Down syndrome.
Dr. Capone shares the knowledge he has gained at the Kennedy Krieger Institute evaluating children who experience a dramatic loss (or plateauing) in their acquisition and use of language and social-attending skills. He will discuss when these changes could be signs of a co-existing autism disorder or other behavioral or psychiatric conditions such as ADHD, OCD or mood disorder.
Based on his extensive knowledge and many years of practical experience, Dr. Chicoine will discuss the evaluation of sudden functional changes in younger adults with Down syndrome in the context of regression and Alzheimer’s and suggest ways to thoughtfully approach these changes.
George T. Capone, M.D.
Dr. George Capone is an associate professor of pediatrics at the Johns Hopkins University School of Medicine. Dr. Capone is committed to research that explores the neurobiologic basis of cognitive impairment and co-morbid neurobehavioral and psychiatric disorders associated with Down syndrome.
He is also a research scientist and director of the Down Syndrome Clinic and Research Center (DSCRC) at Kennedy Krieger Institute, as well as an attending physician on the institute’s comprehensive rehabilitation unit.
Brian Chicoine, M.D.
Dr. Chicoine is the Medical Director of the Advocate Adult Down Syndrome Center in Park Ridge, IL. He is on the faculty of Family Medicine at Advocate Lutheran General Hospital. Dr. Chicoine is the cofounder of the Adult Down Syndrome Center that has served and documented the health and psychosocial needs of over 6000 adolescents and adults with Down syndrome since its inception in 1992.
This past January, the sixth annual Funding Futures Chicago (FFC) event raised over $145,000 for LuMind™ Research Down Syndrome Foundation (LuMind RDS) to fund Down syndrome research. Funding Futures began in 2012 when a group of dedicated families in the Chicagoland area decided to host a fundraising event for LuMind RDS (then DSRTF) with live music, food, drinks and a silent auction. Since the first event, FFC has raised over $700,000 for LuMind RDS, and continues to grow. On September 20, Funding Futures New York (FFNY) will make its debut at City Winery in New York City.
“We are excited to bring this event to another city,” says Margie Doyle, Director of Development at LuMind RDS and co-founder of FFC. “Over the last six years, we’ve created a community in Chicago that supports and propels the advancement of Down syndrome research, and we look forward to doing the same in New York.”
The September event will be organized by a new committee established in New York City, comprised of parents, friends and family of children with Down syndrome and LuMind RDS supporters. The committee members include Genevieve Shaw Brown, Rachel Adams, Joan O’Neil Ipsen, Austin Gordon, Joey Orfini, James Orfini and Katie Peraino.
Proceeds from the Funding Futures events support research projects funded by LuMind RDS to prevent Alzheimer’s onset, improve cognition, develop gene therapy and advance understanding. Since 2004, the Foundation has provided $17 million in grants to fund research for individuals with Down syndrome at top institutions including University of California San Diego, Stanford University, University of Arizona, Johns Hopkins, Emory, MIT, and UCONN Health.
For more information on Funding Futures, or if you are interested in joining the Chicago or New York committee, please visit www.fundingfutures.us.
A lifetime of support:Planning for a
family member who has special needs
Thursday, September 27
2 p.m. EDT
Toll free: 1-866-747-5167
Long-time LuMind RDS friend and supporter, Elizabeth McKenna, CFP, ChSNC, is hosting a complimentary webinar/teleconference along with Shirley B. Whitenack, Esq., to discuss financial planning for a family member who has special needs. McKenna, a Wealth Management Advisor at Merrill Lynch, and Whitenack, Co-Chair Elder & Special Needs Practice at Schenck Price Smith & King, LLP, will discuss some of the potential financial, social and legal issues facing parents who have a family member with a disability.
They’ll also talk about strategies for:
- Putting in place the things you want to happen now and after you’re gone
- Helping ensure your loved one’s current quality of life through supplemental income while maintaining government benefits
- Preserving your estate for your family or charitable organizations
• Balancing your financial goals for the benefit of your loved one with a disability and your entire household
For further information call Michelle MacDonald at 973-301-7645 or email firstname.lastname@example.org
Don’t miss an informative symposium highlighting Down Syndrome Research progress The Up of Down: An Insight Into the World of Down Syndrome Established by Alexander’s Angels, Inc. in 2007
This program is co-hosted by Alexander’s Angels, Inc. and New York Institute of Technology (NYIT) NYIT College of Osteopathic Medicine Riland Auditorium Old Westbury, NY 11568 Thursday, October 11, 2018 Time: 1:30 p.m
Please join us for dinner after the symposium.
At Libon Café, Jericho – Price $45
Send cash or check to Alexander’s Angels, Inc.
425 N Broadway #486, Jericho, NY 11753
Join LuMindRDS at the 33nd DSAC Convention on October 13th at the Sheraton Hotel Hartford South
Hampus Hillerstrom, President and CEO of LuMindRDS will be presenting “On the Verge of Research Breakthroughs”: Why We Should Be Excited & Rally Now. Our community, the public and the pharmaceutical industry once thought that therapies to improve health and independence in all ages with Down syndrome (Ds) are too complex. Learn about the recent scientific breakthroughs that challenge this thinking.
- Alzheimer’s therapies can soon be tested in people with Ds
- Silencing genes of concern is closer to becoming reality
- Digital medicine approaches may be prescribed to improve neurocircuitry
- Anti-inflammatory approaches may benefit Ds
- Other breakthroughs are ready for rigorous development
Stop by our booth to learn more about the exciting research that is getting closer to clinical trials and the new LuMind RDS initiatives for the Down syndrome community.
To find out more information about the conference, go to the DSAC website at mydsact.org Our thanks to DSAC for inviting LuMindRDS and for the conference committee for their exceptional work organizing this conference.