Let’s spread the news!!!
On behalf of the Alternating Hemiplegia of Childhood Foundation, I am pleased to officially announce the publication today of groundbreaking research in Nature Genetics online edition. See the abstract here. The research is a collaboration that grew from our Pepsi Refresh victory, and has resulted in the identification of a gene responsible for the majority of AHC cases. See detailed information for families here.
THIS IS HUGE!!!
This discovery may put us on the path to effectively treating or even CURING AHC in the next 10 -15 years. And it all stemmed from YOUR efforts!!!! From the bottom of my heart I express complete gratitude for the generosity of the numerous people who voted for our idea, who have donated time & money to get us to this point, and for the research teams around the world who came together to make this happen.
Our families now have more hope than ever that we can make a difference for AHC sufferers & give them relief from this debilitating disorder. Our supporters now know that their resources have had a tremendous positive impact. Doctors are now empowered with a more effective way to definitively diagnose AHC, so we anticipate an increase in the number of known cases in the months to come.
It is my hope that this historic news, and our against-all-odds story of achieving this milestone, will inspire people to spur us on to the next steps we need to achieve. There are a variety of things we need and want to accomplish for our families and for the journey to the cure. See “C-ing the Future” for those things we have in mind.
We will have a media release in the next few days, and have an agency that is working on our behalf to bring the story of how this all unfolded to the attention of national media. You can help that process by taking the release (when we post it) and making sure your local media sees it (adding your own story to it, if you are a parent or supporter of an AHC sufferer). Please also let me know if you are willing to be interviewed, so we can be ready when :) interview requests come in.
Meanwhile, let’s celebrate!!!
President, AHC Foundation
President’s Office: 545 Irina Dr Rolesville, NC 27571
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