Coffin-Lowry Syndrome Foundation

Contact

Coffin-Lowry Syndrome Foundation
Attn: Theresa Moxley
234 Knotting Place
Madison, AL 35758

(256)-684-2480
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

Students

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.

Researchers

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
France
Germany
Portugal
Spain


 

 

 

How to Join CLSF

If you are an immediate family member and/or caregiver for someone with CLS, please register by providing the information shown below in an email or to our postal address:

• Family Contact first and last names
• Address
• City, State, ZIP
• Country, if other than USA
• Home Phone
• Email Address
• Primary Language
• The first and last name of the person(s) with CLS that you represent, and their birthdate(s)*
• Confirm that you give your permission for your contact information to be shared with other families affected by CLS: Y/N (See Privacy Statement, below.)

*Please provide this information for each affected family member. The birthdates are only for keeping track of how old they are over time and are not used for any other purpose.

Why Register?

• Family matching services with hundreds of families world-wide.
• CLSF News delivery, ~4 times a year
• Volunteer opportunities for research studies
• Be informed of new developments in treatment options and therapies.
• Emotional and social support by people who know just what you are going through.

There is no membership fee for caregivers and immediate family members. For others, a $10/yr donation is suggested but not required.

 

Privacy Statement

Contact information is included in the newsletter one time in order to introduce new members. The newsletter is mailed to CLS members and a small group of medical professionals and others with direct involvement with CLS.  CLSF does not share your contact information with any other agency or business without explicit permission. If you do not wish to release your contact information to CLSF members, you may still join CLSF and receive newsletters and join the CLSF private Facebook group. However, you will not receive contact information for other families or be provided with family matching services.