A huge donation is received, fundraising ideas for anyone, research articles summarized, grant is funded, family meeting registration is open, fundraisers were successful, and a few tax return ideas for our community are all covered in our latest edition of the AHCF newsletter.
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SOUTHFIELD, Mich., March 2, 2016 /PRNewswire-USNewswire/ — On Rare Disease Day, February 29, 2016, the Alternating Hemiplegia of Childhood Foundation (AHCF) received a donation from the Jake and Nina Kamin Foundation in the amount of $125,000. “I am glad to help in this endeavor and I am very optimistic that the research will find better drugs that will help the AHC kids,” said Susan Smith, president of The Jake and Nina Kamin Foundation.
The AHCF hopes to raise $550,000 to fund the next round of research projects and this amazing donation will get the foundation closer to that goal.
Tobe Cohen, father of AHC Hero Asher commented, “It is so rewarding to see the caring and generosity that I saw in my Uncle and Aunt in their lifetime, continue on through the Jake and Nina Kamin Foundation. The foundation’s gift will enable critical research to continue in the search for a treatment and cure for Asher and all the kids who battle AHC every day.”
For more information or to donate, visit ahckids.org. AHCF can also be found on Facebook and Twitter.
You can find the complete Issue HERE
My name is Jeff Wuchich, and I am grateful to serve as the newly elected moderator of the AHC International Alliance. I am the Co-Founder and President of Cure AHC (www.cureahc.org) and also dad to AHC Champion Matthew (NC, USA)- his story http://bit.ly/MWUCHICH . Thank you to my fellow Association leaders and Country representatives for selecting me.
In the coming months we’ll work hard together as an alliance to share the latest and greatest AHC research, fundraising, and community news. Stay tuned!
The AHC International Alliance is working on a documentary about Alternating Hemiplegia of Childhood.
The documentary will review the history of AHC from 1971 when it was first characterized.
There will be interviews with families and professionals that are on the forefront of the disease.
The documentary will be translated in at least 8 languages.
The purpose of the documentary is to find the undiagnosed AHC champions, raise awareness and to expedite research on AHC.
Please go to INDIEGOGO to support the project
Thank you so much
From AHCIA Moderator Lynn Egan: The Rome Symposium was very exciting.There were over 60 scientists and physicians and 20 parent representatives in attendance. The presentations were interesting if sometimes over our heads. Continue reading
2nd symposium on ATP1A3 in disease: genotype/phenotype correlations, modeling and identification of
potential targets for treatment
Catholic University of Rome – School of Medicine
Rome 23- 24 September 2013
Program and Brochure http://www.symposium-atp1a3.tk/
Contact Maria Rosaria Vavassori, for more information.
A.I.S.EA onlus email@example.com