Important Urgent informationFor patients with Alström Syndrome admitted to the hospital or outpatient facilities, even if for routine minor surgery with anesthesia or sedation, it is vitally important that medical and nursing staff is aware that hypoxia (low blood oxygen levels) can occur very rapidly in patients with Alström Syndrome. In some patients, this has lead to life threatening heart/lung problems because of the reduced reserve capacity of the cardio respiratory system. Please inform your physician and medical team to use all precautions for monitoring oxygen saturation. |
“LISTEN NUTRITION” – A YouTube recording on food and nutrition for young people with Alstrom Syndrome
College Resources for Students with Disabilities guidebook
Guide to scholarships and financial aid for students with disabilities
Jamie’s Resource List for the Visually Impaired
External resources
Please note:
We do not control or endorse the information presented on these Web sites. They are listed for informational purposes only.
ASI Executive Director
Robin Marshall
14 Whitney Farm Road
Mount Desert, ME 04660 USA
robin.marshall@alstrom.org
ASI Scientific Advisory Board
Clair Francomano, MD
Harvey Institute for Human Genetics/GBMC
6701 N. Charles Street, Suite 2326
Towson MD 21204 USA
Phone: 443-849-3131
Email: cfrancomano@gbmc.org
ASI Family Outreach Coordinators
Carrol Birchall – UK
carrol_birchall@outlook.com
Gina Denbow – Canada
codkate@nbnet.nb.ca
Sibling Support Coordinators
Lynn and Cassie Johnston – Texas USA
johnstoncassie2@aol.com