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: clair.francomano@alstrom.org

ASI Family Outreach Coordinators

Gina Denbow
Shelly Marshall
Sarah Durfey

A-Team Outreach Coordinators

Shelly Marshall
Kim Wedel

Sibling Outreach Coordinators

Katie Marshall

IMPORTANT URGENT INFORMATION

For 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.

Jamie’s Resource List for the Visually Impaired (PDF)

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