You’re invited to the Conference on the
Progress of Down Syndrome Research
Wednesday, March 20, 2019
We invite you to attend this great research symposium on March 20 @ 1:30pm in Mineola, New York organized by our friends at Alexander’s Angels featuring great research that has been supported by LuMind RDS. It’s a great opportunity to hear about progress in Down syndrome research directly from the researchers. The symposium is open to families and healthcare providers. Space is limited so you can reserve your spot today online at winthrop.cloud-cme.com.
The Up of Down: An Insight into the World of Down Syndrome is a Joint Provider Conference with Alexander’s Angels, Inc. and NYU Winthrop Hospital. The focus is to highlight the Down syndrome research progress and consists of speakers from a broad spectrum of specialties. Current findings will be presented by faculty from prestigious universities with affiliated hospitals on their campus. The conference will cover a wide range of topics including plans to explore a broad number of topics related to Down syndrome.
Roger Reeves, PhD.
Rethinking Alzheimer Disease in the Context of Down Syndrome
William Mobley, MD, PhD
Gene Dosage in Cellular Models of Trisomy 21
Stefan Pinter, PhD
Review the FDA Approved Study Looking at the Effect of Hypoglossal Nerve Stimulation in Treating Children Ages 10 to 21 with Down Syndrome and Significant Obstructive Sleep Apnea (OSA)
Christopher Hartnick, MD, MS
At the end of this symposium, learners should be able to:
• Discuss improvements in learning and memory in individuals with Down syndrome
• Assess and discuss why we see early onset Alzheimer’s in individuals with Down syndrome
• Explain research findings regarding cellular models
• Discuss common developmental and behavioral observations of individuals with Down syndrome
• Identify medical predispositions in individuals with Down syndrome
• Benefits of Hypoglossal Nerve Stimulation
• Discuss the effects of Down syndrome on the immune system
Please register at winthrop.cloud-cme.com
SPACE IS LIMITED. REGISTER EARLY.
NYU Winthrop Research & Academic Conference Center
101 Mineola Boulevard
Mineola, NY 11501
Registration is FREE and includes educational materials, refreshments and CME-CE credit certificate.
Join the WDSD 321 Virtual Run/Walk – Actively Support Ds Research
World Down Syndrome Day (3/21) and, here at LuMind Research Down Syndrome, we’re wondering how YOU plan to celebrate.
Won’t you join us in *actively* showing your support of Down syndrome cognition research by signing up to participate in the World Down Syndrome Day 321 Virtual Run/Walk event? This “virtual” event is an opportunity for people across the world to come together to advocate and self-advocate for persons with Down syndrome. We have a goal to unite a team of supporters across the world in raising funds for Down syndrome research by team fundraising throughout the month of March 2019.
To participate, we ask that you commit to taking part in some kind of physical activity throughout the month of March involving any sort of variation of the numbers 3-2-1. Then on WDSD (3/21) post pictures, or video, of your 3-2-1 activity on our Facebook Group. Participate on your own, or rally a team to help you participate and fundraise. After registering, we encourage you to set up your fundraising page and ask friends and family for their support. We have some great fundraising prizes for this year’s teams
Anyone who registers for the event will receive a cotton t-shirt and a medal, but only those registrations received before March 1 are guaranteed receipt of their shirt by March 21, 2019.
- Commit to walking or running 3.21 miles
- Swim 321 laps in the pool
- Hop on the elliptical or Stairmaster for 32.1 minutes
Don’t be afraid to get creative! We’ve had participants send us their photos of going for a run along Route 321 or commit to running 3.21 miles EVERY day throughout the month of March!
Whatever activity you decide to do from lacing up your running shoes, snap on your helmet, or dive in as part of the World Down Syndrome Day 321 Virtual Run/Walk and support cognition research!
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.
June 27-30, 2019
David Lawrence Convention Center
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. 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. The presentation will be held in the City View Room 320, 3rd Floor.
Saturday June 29th, 7:00-9:00am
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. The Research Rally is located in Ballroom B & C on the 3rd Floor.
Online Registration for the Research Rally is closed at this time. If you would still like to join us Saturday morning please stop by booth 100 and sign up.
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.
Join us on July 25th @ 3:00pm EST
To register for this free event click here
Beth Kallmyer, Vice President, Care and Support from National Alzheimer’s Association and Teresa Galbier, President/CEO, Alzheimer’s Association Rochester and Finger Lakes Region will cover several aspects of Alzheimer’s disease as it relates to individuals living with Down Syndrome including signs and symptoms, the importance of a cognitive baseline, caregiving strategies and living well.
REGISTER today to watch live session on 7/25 at 3 p.m. EST or an on-demand recording later.