Independence Initiative

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

 Hampus Hillerstrom, Chief Executive Officer - LuMind IDSC Foundation
Hampus Hillerstrom
Chief Executive Officer
LuMind IDSC Foundation

“We want to improve the quality of life for people with Down syndrome and their caregivers by supporting transformational, high-impact approaches to make our loved ones with Down syndrome as independent as possible.”


 

Overview

Independence is a challenge for all people with Down syndrome and their caregivers. Challenges include cognition, speech, and communication, behaviors and more. We are interested in any approaches that can improve independence and there are a variety of potential solutions to improve independence with drugs, digital medicines, gene therapies, health IT, and other technology approaches. LuMind IDSC supported cognition research since our founding in 2004, and we continuing to support high-impact approaches that can help improve independence, including novel gene therapies.


 

Why it Matters

According to a recent LuMind IDSC caregiver survey, 89% of caregivers who responded want their loved one to be as independent as possible (and an additional 9% want them to have some independence). Caregivers reported independence goals for safety, self-care, daily living, social/leisure time, vocational/employment and communication. Also, the caregivers have important unmet independence needs of their own. Cognitive impairment affects everyone with Down syndrome. Speech and communication and behavior challenges limit many people with Down syndrome. And in rare cases regression leads.


 

What LuMind IDSC is Doing

LuMind IDSC is working on the following:

  • Supported a multitude of novel cognition-targeted approaches;
  • Conducted the largest survey on independence for people with DS and their caregivers;
  • Supporting the development of several cognitive assessment scales;
  • Held expert meetings on novel approaches for independence such as gene therapy.
  • Supporting gene therapy approaches, that have the potential to identify genes of interest as well as to conduct gene therapy in this population.
  • Supported the Down syndrome Cognition Project to document the differences in cognition in children and young adults with DS.

 

How You Can Help


INDIVIDUALS

GET INFORMED: Keep up with progress on research for independence.

VOLUNTEER: Sign up to participate in independence surveys and studies.

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

DONATE: Every dollar donated grows the funds needed to fund support for more clinical trials and resources for sleep apnea in children and adults with DS.

LOCAL DS ORGANIZATIONS

CONNECT families to clinical trials near you by sharing LuMindIDSC.org/clinical-trial-finder and other LuMind IDSC resources

SHARE research and clinical trials newsletters to educate families

DONATE: Every dollar donated grows the funds needed to fund support for more clinical trials and resources for sleep apnea in children and adults with DS.