Coffin-Lowry Syndrome Foundation

Support for families affected by Coffin-Lowry Syndrome


Coffin-Lowry Syndrome Foundation
Attn: Mary C. Hoffman
675 Kalmia Pl NW
Issaquah, WA 98027

(425) 427-0939 after 5 pm PST
E-Mail Us

"Thank you for having this website, I have referred to it many times over the last 7-8 years and regret that I haven't registered before now."   - Dianna Garvin, Bargersville, IN

"I am so grateful for this foundation. I really don’t know what I would do without it."  Sharyn McGrath, Victoria, Australia

"Reading the messages brought back memories of how desperate I felt when Shane was diagnosed and was very thankful for the existence of this foundation where I found much support, help and comfort."  - Phebe Kanaratnam-Roberts


Please refer to the FAQ, Characteristics and Literature sections of this site before writing to ask for information. There are no additional pamphlets or hard-copy materials available. In order to protect the privacy of the member families, students are not allowed access to the Facebook group.


Need volunteers for a research study? Email us and your volunteer opportunities will be presented to the membership through CLSF.

Coffin-Lowry Syndrome Foundation on Facebook

The Coffin-Lowry Syndrome Foundation private Facebook group is restricted to families, close relatives, caregivers, teachers and medical professionals who have direct connections to people who have CLS. To join, email  us and provide your full name and Facebook address and tell us about the person with CLS that you are related to or work with.  If membership to the Facebook Group is approved, you agree that content you post may appear in future issues of CLSF News, in alignment with your privacy preferences.

Parent-Supported Facebook Groups

There are a number of parent-operated Facebook pages devoted to Coffin-Lowry syndrome. These groups may not be limited to CLS families and may not be affiliated with CLSF. Privacy is not guaranteed - use at your own risk:

United States