Alzheimer’s Iniative

Overview  Why It Matters  |  What LuMind IDSC Is Doing  |  How You Can Help

Jim Hendrix
Chief Scientific Officer
LuMind IDSC  Foundation

“We strive to delay the onset of Alzheimer’s in adults with Down syndrome by 20 years or more.”


 

Overview

LuMind IDSC is very actively engaged in bringing treatment solutions for Alzheimer’s in Down syndrome. We use a comprehensive approach to address this major health crisis for our loved ones: we engage with you the families, with the researchers community, with regulators and with industry companies to test their promising drug candidates in our population. We make every effort to provide the infrastructure and necessary tools to support clinical trials in the adult Down syndrome population.


 

Why it Matters

95% of people with Down syndrome will get Alzheimer's by age 68

With medical advances and better healthcare, people with DS are living longer and nearly 90,000 of those aging in the United States are now over 30. 50% will be affected by dementia caused by Alzheimer’s at age 55, 70% at age 55-60, and 95% at age 68. In the general population, only 12%  over the age 65 are affected.

This is a health crisis for our loved ones with DS and their caregivers, some of whom may have dementia themselves at the same time. At LuMind IDSC we are doing everything in our power to make sure Alzheimer’s treatments are effective and available for adults with Down syndrome first.


 

What LuMind IDSC is Doing

LuMind IDSC works tirelessly to:

  • Fund, lead and grow the DS-CTN clinical trials network that was initially launched 11 sites;
  • Fund the first DS-CTN study, LIFE-DSR, a natural history study with 270 adults with DS to validate new assessment scales, imaging tools and document occurrence of symptoms and co-morbidities in the adults with DS;
  • Develop assessment tools that will measure efficacy specifically in clinical trials for Down syndrome;
  • Lead discussions with industry companies and academic investigators and offer the support of DS-CTN to include adults with DS in clinical trials for their promising drug candidates;
  • Reach out to the adult population with DS and build healthcare resources for their specific needs;
  • Collaborate with the research community to continuously communicate milestones and research goals for Down syndrome to families and caregivers;
  • Convene researcher and clinical workshops on important scientific and treatment topics;
  • Actively engage with families and the DS community to rally for research.

 

How You Can Help


INDIVIDUALS

GET INFORMED: Keep up with active clinical trials: DS-CTN.org, DS-CTN.org/LIFE-DSR, LuMindIDSC.org/clinical-trial-finder, and www.clinicaltrials.gov

VOLUNTEER: If a DS-CTN site is near you and you want to participate in a clinical study, talk with your physician or email us at ds-ctn@lumindidsc.org for more information.

SHARE: Share this information with those you know may benefit.

DONATE: Every dollar donated grows the funds

LOCAL DS ORGANIZATIONS

CONNECT families with research and clinical trials by sharing LuMind IDSC resources

COLLABORATE with a DS-CTN site near you on family outreach

SHARE research and clinical trials newsletters to educate families

FUND a local DS-CTN site