Deborah and Chris Heine lost their daughter Claire to SMA in November 2004. They started the Claire Altman Heine Foundation (CAHF) in memory of Claire and have dedicated themselves to developing a global SMA carrier screening program so that future prospective parents are made aware of SMA and could potentially avoid having to endure the impacts of this horrible disease.
Recently, CAHF reached an extremely important milestone. As a result of CAHF's two year collaboration with the American College of Medical Genetics (ACMG), the association for the medical genetics profession, ACMG will now be recommending that medical geneticists offer an SMA carrier test to all prospective parents. ACMG has developed a policy statement with their recommendations and CAHF will be providing a grant to ACMG to fund educational materials for physicians and patients to further awareness of the new program.
Congratulations to the Heine's and thank you so much for all that you have done and are continuing to do to protect others from SMA.