Coffin-Lowry Syndrome Foundation

We’re back again for our third year racing to raise funds for the Coffin-Lowry Syndrome Foundation!

Our Liam was diagnosed with CLS three years ago. CLS is a very rare genetic disorder that causes mental and physical abnormalities. Since it is rare funding is limited. We felt called to honor our Liam and all other kiddos affected by CLS by raising funds for the Coffin-Lowry Syndrome Foundation.

CLSF is where parents turn once they get their diagnosis. Mary Hoffman, founder of CLSF, gathers and shares any and all information she can about traits of CLS, effects of CLS, therapies for CLS, and most importantly she uses the foundation to connect effected families. The money we raise will go to support more research, family gatherings, equipment and tools for CLS kids, and so much more! We appreciate your donation!

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Any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to me. More information about Coffin-Lowry Syndrome Foundation: The purpose of the Coffin-Lowry Syndrome Foundation is to provide a clearinghouse for information on Coffin-Lowry Syndrome (CLS), and to provide families affected by CLS a general forum in which to exchange information, ideas and advice. CLSF provides family matching services, telephone support, online discussion forum and publishes a newsletter for members - CLSF News.

Mathis has recently been diagnosed with Coffin-Lowry syndrome, a rare genetic disorder. The incidence rate is 1 in 50,000 to 1 in 100,000. That is how unique our little warrior is!

Because of this condition, Mathis has faced many challenges, and he is only 2... However, they have not stopped him from smiling and being the happiest boy I have ever met, truly! He will be scheduled for cochlear implants surgery in the next few weeks and we are hopeful that this surgery will rock his world and will create endless opportunities for him to experience the world in newer, richer and more exciting ways.

Mathis, along with his proud and very protective big brother and big sister, Kyan and Amelie, is the love and light of our lives, and he has been shining bright since he was born. Our hope is that he will fight on, will continue to amaze us, inspire us and strive.

We love him dearly and are also very grateful to have such a wonderful network of loving, devoted, and caring people who have shown nothing but support and endless love for him. But then again, how can you not love such a sweet, funny, handsome and cuddly little guy?

We ask that you please consider donating to support research for this syndrome and/or help raise awareness to help other children who are diagnosed with Coffin-Lowry and who may not be lucky enough to have the support and resources that Mathis has.

I will be running the NYC marathon on November 5th with the goal of raising funds for the Coffin-Lowry foundation and help research. If you are around, please come and cheer me on!

We thank you for being a part of his life, one way or another. We hope that one day, these beautiful children with CLS will become a more visible group in various communities and that both medical and behavioral research will help improve and support methods of social integration for our very very special little guys!

Love,

Sandrine, Cedric, Kyan and Amelie