Shaping the Future: The State of Down Syndrome Research Today
The 35th Annual Conference at the DCU Center in Worcester, MA on March 23rd.
We’re proud to partner with the Massachusetts Down Syndrome Congress (MDSC) team to collaborate and sponsor their first research-focused event for families — Shaping the Future: The State of Down Syndrome Research Today.
This year, the community will gather to delve deep into the promising developments in Down syndrome research and the exciting potential it has for the future with session topics including:
→ innovative clinical trials and studies underway nationwide that have promise to make a difference in people’s lives
→ the latest research on sleep apnea, nutrition and obesity behavior, inclusive education, clinical care medical and neurodevelopmental conditions, speech and language pathology, and Alzheimer’s disease
→ information on the latest groundbreaking research into “silencing the extra chromosome.”
→ how to participate in Down syndrome-specific research studies, including the National Institute for Health’s DS Connect portal.
The offerings address the needs of people with Down syndrome from childhood through aging adult with useful information for self-advocates, siblings, grandparents, support providers, education and medical professionals, and researchers.
To learn more and take advantage of the early-bird registration rates, visit the conference website before March 11.
Please join LuMind RDS at the 2019 NDSS Down Syndrome Adult Summit in Detroit, Michigan April 4 – 6, 2019. The summit will be hosted at the Detroit Marriott at the Renaissance Center.
The 2019 NDSS Down Syndrome Adult Summit is open to all individuals who play any role in the life of individuals with Down syndrome with a specific focus on caregivers, family members, professionals, and individuals with Down syndrome.
|SATURDAY, APRIL 6 at 10:45 a.m.
DS-CTN, How Clinical Trial Networks Speed up the Availability of Treatment Options for People with Down syndrome (H)
James Hendrix, Chief Scientific Officer, LuMind IDSC Foundation
Breakout Room: Marquette A&B
With a global population of greater than 5.3 million people, Down syndrome (DS) represents a large population with many unmet medical needs. LuMind is responding to this need with the establishment of the Down Syndrome-Clinical Trials Network (DS-CTN) to facilitate more clinical research in the DS population. In this session, the clinical trials process will be explained and a description of the first study in the DS-CTN, the Longitudinal Investigation For Enhancing Down Syndrome Research (LIFE-DSR) study. It is estimated that by age 55–60 years at least 70% of people with DS will develop Alzheimer’s dementia. An important question is whether it is possible to prevent or mitigate cognitive deficits associated with AD. The LIFE-DSR study will observe people as they age to set the stage for future treatment trials in Alzheimer’s.
Join LuMind RDS Runners at the Pittsburg Marathon Series on May 5th!
Join us for our 2nd time at this amazing race for a weekend full of family fun and races! With so many distances to choose from – full marathon, half-marathon, five-person relay, 5K, kids one-mile, and pet walk – you’re sure to find the race that’s right for every member of the family!
Click here to learn more about Pittsburg Marathon Series
Join LuMind RDS Runners at the Flying Pig Race Series on May 5th!
The Cincinnati Flying Pig Marathon is a beautiful course, which flies along the streets of Cincinnati, Covington, Newport, Mariemont, Fairfax, and Columbia Township. Join us for the 5K, 10K, Half, Full, or Relay Marathon.
Click here to learn more about Flying Pig Race Series
Webinar: – LIFE-DSR – A National Launch for the First Natural History Study in Adults with Down Syndrome
Join us on May 30th @ 4:30pm EST
To register for this free event click here
Dr. James Hendrix, LuMind IDSC Chief Scientific Officer, discusses the launch of the LIFE-DSR (Longitudinal Investigation for Enhancing Down Syndrome Research) study in the attached blog post. This is a first for LuMind IDSC and represents an important milestone for Down syndrome research. The LIFE-DSR study will be the first study run in LuMind’s DS-CTN (Down Syndrome – Clinical Trials Network) which includes 11 research sites in 9 states.
Read more here: https://www.lumindrds.org/life-dsr-study/
Ready to learn even more and ask Dr. Hendrix questions? Great! Register and join our webinar, LIFE-DSR, where you will learn why LuMind IDSC is launching the first natural history study for adults with Down syndrome and why this is a game changer for Down syndrome clinical trials.
LuMind IDSC is a Founding sponsor of T21RS and a main sponsor of this important meeting of international research teams focused on Down syndrome. LuMind IDSC is presenting a scientific poster on the upcoming LIFE-DSR study.
The Third International Conference of the Trisomy 21 Research Society will take place in Barcelona. The biennial T21RS International Conference is the premier scientific meeting for Down syndrome research, attracting basic and clinical scientists and practitioners from around the world. With plenty of opportunities for networking and debating, this informal international meeting will bring you up to date with current research and thinking regarding Down syndrome.
We hope to meet you at our booth or at our presentation:
Saturday, June 8, 2019
12:15 Parent-reported needs for the development of research on Down syndrome (10 minutes presentation + 20 minutes debate)
Hampus Hillerstrom (LumindRDS, USA).
Results from the parents’ surveys on knowledge and personal experiences towards Down syndrome studies. Conducted by LumindRDS in the USA and Fondation Lejeune in the European Union.
For the full program please click here.
2019 NDSC Conference
June 27-30, 2019
David Lawrence Convention Center
When you say research we say Rally! Start your Saturday at the LuMind IDSC Research Rally from 7-9am with a Q&A panel featuring DSMIG clinicians, breakfast bar, and opportunities to learn more about research with rally themed games and activities.
You may RSVP starting Monday, March 25th. You will need your convention registration number. To register for the research rally please go to https://www.ndsccenter.org/annual-convention/researchmedicalcare/research-rally-rsvp/
LuMind IDSC is proud to be the RESEARCH RALLY sponsor of the 2019 NDSC Conference. We are looking forward to reuniting with family and friends on June 27th in Pittsburg to continue collaborating in our shared goals of improving health and independence in individuals with Down syndrome. The LuMind IDSC booth is located at 100 and 101. Stop by to learn more about the exciting research, our Clinical Trial Network and the new LuMind IDSC initiatives for the Down syndrome community.
Friday, June 28, 1:30-3:00pm
Dr. James Hendrix (CSO) and Hampus Hillerstrom (CEO) are leading a presentation on Leading the Way in Down Syndrome Research: Why We Should Be Excited About The Future
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 Summer Double Dip”
3rd Annual summer soirée benefitting
LuMind IDSC Foundation and The IDEAL School
August 3, 2018
East Hampton, NY
To find out more about this event or make a donation please go to The Summer Double Dip webpage.
Children and adults with Down syndrome impress us everyday as they work hard to overcome challenges with health, learning, memory and speech at home, school and work. Your donation today advances the work of two organizations that are helping individuals with Down syndrome achieve their very best through education and research.
LuMind IDSC Foundation aims to improve health and independence for millions of people with Down syndrome worldwide through cutting-edge science to prevent Alzheimer’s onset, improve cognition, develop gene therapies and advance understanding.
Founded in 2004, LuMind RDS has granted $20 million to research that has led to additional NIH funding, the discovery of 10 therapeutic targets, 2 Down syndrome-specific cognitive assessment scales, and 14 interventional and observational clinical trials in 1300 participants. In 2017, LuMind IDSC launched the first Down Syndrome Clinical Trials Consortium planning effort to enable testing of promising treatments for Alzheimer’s currently in development for the general Alzheimer’s population also in large scale clinical trials in individuals with Down syndrome. We encourage you to visit https://www.lumindIDSC.org/ to learn more about the research that is ready to make a difference.
The IDEAL School of Manhattan, where Troy is a student, is a nurturing environment that values diversity and includes students from a variety of socioeconomic, religious, and ethnic backgrounds. They embrace the learning opportunities that are created by working with students of varied learning profiles, talents, and interests.
Visit https://www.theidealschool.org/ to see how your donation can make an impact for so many students in their school.
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.lumindrds.org/2019familyweekend.