“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.”
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