Make an Impact

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Safely Electronically

The Coffin-Lowry Syndrome Foundation is a tax-exempt non-profit corporation under IRS code 501(c)(3) and is funded solely by donations.  
CLSF is also qualified to receive tax deductible bequests, devises, transfers or gifts under section 2055, 2106 or 2522 of the Code. In order to qualify for a charitable contribution tax deduction, donations must be made directly to the Coffin-Lowry Syndrome Foundation.

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Committees and Groups

CLS parents serve on various committees and groups to assist in running of the foundation. Current committees include:

Family Gathering Committee – This group is made up of former Family Gathering hosts who meet with future Family Gathering hosts prior to their future event to assist in planning the event.

Fundraising Committee – This committee will lead various fundraising endeavors to help in the continued operation of the Foundation, to help fund Family Gatherings and assist in funding research as possible.

Medical Publication Committee – This group researches the internet for existing and new publications related to CLS research to continually update the www.coffinlowry.org website with the latest information related to CLS.

Research Committee – This committee works with the CLS Foundation leadership and external research organizations who are interested in conducting research related to CLS. This group coordinates with the parents to gather additional information and/or medical specimens if needed.

CLS Talks Planning Committee – This group will plan and coordinate the quarterly CLS Talks sessions. CLS Talks are led by parents for parents. They will work with parents as they develop and present the sessions.

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