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
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. Enjoy a light breakfast, learn about current research projects, get up to date info from a panel discussion with Drs Capone, Chicoine, Hendrix and Skotko, and participate in pep-rally activities that will keep you engaged in research all year.
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 30th in Pittsburg to continue collaborating in our shared goals of improving health and independence in individuals with Down syndrome. Swing by the LuMindRDS Booth to learn more about the exciting research, our Clinical Trial Network and the new LuMind IDSC initiatives for the Down syndrome community.
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.
2019 San Francisco Marathon, Half Marathon, and 5k Race Series (July 28, 2019): Guarantee your FREE entry into any of the races offered in San Francisco this summer. For More information email firstname.lastname@example.org
Picture yourself racing on the roadbed of the Golden Gate Bridge as the California sun breaks through San Francisco’s iconic maritime fog. Bursting from the Embarcadero’s waterfront start line at the break of dawn. Racing through towering eucalyptus and redwood trees in Golden Gate Park. Passing AT&T Park with its atmosphere of gameday anticipation and the crack of the bat. There are 4 different race options, join us for a 5k, 10K, Half Marathon or Full Marathon
”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.
Chicago is one of the World Major’s of Marathons and we have your GUARENTEED Entry to the 2019 Race. Check out our website for all the details for running with LuMind RDS.
Click here to learn more about Chicago Marathon
If you received your own entry to the 2019 Chicago Marathon but still want to fundraise with our team email email@example.com
Join LuMindRDS 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 RDS initiatives for the Down syndrome community.
To find out more information about the conference, go to the DS ACT website at mydsact.org Our thanks to DS ACT for inviting LuMindRDS and for the conference committee for their exceptional work organizing this conference.