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

Hampus Hillerstrom, CEO of LuMind IDSC Foundation
Hampus Hillerstrom
Chief Executive Officer
LuMind IDSC Foundation

“Our efforts aim at lowering the health risks of sleep apnea in Down syndrome by providing access to simple, home-based screens and effective sleep apnea treatment options tailored to the needs of each person.”



Sleep apnea disproportionately affects the Down syndrome population (at least 10x more frequent) and, due to the inconvenience and challenges of overnight sleep studies, many individuals with DS go undiagnosed for years despite the consequences for their health. LuMind IDSC funded studies have shown that verbal IQ was 9 points lower in children with OSAS and Down syndrome, who also showed executive function deficits.

Treatment options such as CPAP only benefit a portion of those diagnosed with sleep apnea and most are not aware of the alternative treatment options. Improvements in the diagnosis and treatment of sleep apnea in Down syndrome are dearly needed and LuMind IDSC is supporting and/or developing solutions for both.


Why it Matters

Sleep apnea affects 60-80% of individuals with DS compared to 5% in the general population and untreated sleep apnea can affect behavior and cardiovascular health, slower cognitive development, and accelerate the onset of Alzheimer’s Disease. Per a recent LuMind IDSC caregiver survey, only 17% diagnosed with sleep apnea fully benefit from a CPAP mask. Many are not aware of alternative treatment approaches such as hypoglossal stimulation. Also, a diagnosis of sleep apnea through a hospital overnight stay sleep study (polysomnogram) is very cumbersome for people with Down syndrome and alternative solutions are needed.


What LuMind IDSC is Doing

  • Listening to families about the specific needs around diagnosis and knowledge of treatment options through a recent survey with 800 caregivers.
  • Supporting human clinical trials of novel treatment approaches such as the hypoglossal stimulation device and an experimental combination of drugs;
  • Exploring the possibility that the effective treatment of sleep apnea may also improve speech and cognition;
  • Looking for alternatives to the hospital overnight stay sleep study for screening and diagnosis.


Hypoglossal Nerve Stimulator Clinical Trial

10 to 21 year olds with Down syndrome and severe obstructive sleep apnea (OSA)
Recruitment is closed.

Principal Investigator:

Christopher J. Hartnick, MD, MS – Massachusetts Eye and Ear
Director, Division of Pediatric Otolaryngology, Director, Pediatric Airway, Voice, and Swallowing Center
Harvard Medical School – Professor of Otolaryngology–Head and Neck Surgery


How You Can Help


GET INFORMED:Keep up with progress on research for sleep apnea at LuMindIDSC.org/sleep-apnea and LuMindIDSC.org/clinical-trial-finder 

VOLUNTEER: Look for a hypoglossal clinical trial near you on LuMindIDSC and you want to participate in a clinical study, talk with your physician or email us at research@lumindidsc.org for more information.

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.


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

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

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.