The Board of the Alternating Hemiplegia of Childhood Foundation (The Foundation) would like to share with you an update about the research we funded through the Pepsi Refresh Grant.
After The Foundation won the Pepsi Refresh Challenge, we funded research which focused on genetic sequencing of AHC patient blood samples. Through this grant, researchers were tasked on identifying possible genetic mutations that were responsible for causing AHC. As this research continues to proceed through the many stages of scientific discovery, the cause(s) of AHC seems to be close at hand.The Foundation is actively working on bringing this exciting research into the public domain. While we would love to share specific details of this work with you, it is imperative that The Foundation support the researchers as they endeavor to get published and follow well-established medical and scientific protocols.
Please understand that until the research is published, The Foundation can’t publicly confirm or deny specific information about the research results. However, we highly encourage you to attend the Family Meeting in San Francisco this year. At the meeting we will be able to share details regarding this research as it is an acceptable forum for doing so. If questions do arise, please contact our Medical Liaison, Sharon Ciccodicola, so we can further explain The Foundation’s position. Sharon can be reached at firstname.lastname@example.org
The results of this significant research will provide many opportunities for furthering the mission of The Foundation. As we prepare for the official announcement of these findings, it is imperative that we begin finding new means of raising money. The need for additional research will be significant and we look to our families to bring home another success.
Thank you for continuing to work with The Foundation to find the cause and cure for AHC and we look forward with sharing more information with you as it becomes available.
With Sincerest Thanks, Board Members Gene Andrasco – Sharon Ciccodicola – Cate Cohen – Lynn Egan – Mollie Erpenbeck – Dr Joe George – Bill Gerber – Beverly Hensley – Doug Morris – Vicky Platt – Carol Presunka – Mary Kay Riley – Jeff Wuchich