Today, donations to CFC International are matched! Click here to go to the donation page. The money raised today will help fund the CFC Parent’s Guide, which we have used, our families have used, our doctors have used, etc. etc. The organization is focused on concrete things that help kids and families: gathering expert advice from an international team of physicians into a series of digestible guides, funding research that will help us make decisions about Max’s care, and coordinating a conference that brings together not just families but also the physicians and geneticists who can help those families with their CFC-specific questions.
I am someone who is grouchy on the subject of the efficacy of internet ((hugs)) to ameliorate a genetic condition, and who finds that being exhorted to ‘raise awareness’ of a very rare and untreatable genetic defect akin to being asked to ‘pray’ for ‘homosexuals’ (Um, OK. Are we aware enough yet? Did CFC/Noonan’s Syndrome go away? Or, Are the gays married yet? What, wrong prayer? My bad.) CFC International, by contrast, actually gets something done and I am grateful for their work.
If you can, please donate today.
More info on CFC International is on their website here.