AHCF is Blogging!
Welcome to our new Blog. Lynn Egan will be blogging about things that affect AHC families and would love to hear your comments and ideas! The more dialog the better!! Check the blog often and join the conversation! http://ahckids.org/welcome-to-ahc-365/
Family Update Newsletter
One of my favorite things to do for the foundation is to meet with AHC families at the AHCF Family Meeting. It is an incredible opportunity to catch up with old friends and meet new ones, hear from researchers, chat with doctors, and learn from everyone attending the meeting. Read more in our latest newsletter
AHCF Workshop Announced
The Alternating Hemiplegia of Childhood Foundation (AHCF) is proud to sponsor the scientific workshop titled “Achieving Consensus on Definitions and Outcomes for Natural History Studies and Clinical Trials in ATP1A3 Related Disorders.” Co-chaired by Dr Kathryn Swoboda and Dr Allison Brashear, the full day workshop will take place concurrent with the AHCF Family Meeting on June 27th in Minneapolis, MN. (more…)
Family Meeting Update
The Family Meeting is fast approaching and we wanted to update you on some of the plans and also provide you with some things to consider. Thank you to those who have already signed up and a reminder for everyone who is still planning on coming….. (more…)
AHCF Family Meeting
Shrub Oak family seeks funds for cure for daughter’s rare disease
Local news article from the Hodes family about Lisa. Great job spreading awareness about AHC and AHCF!
Gene Andrasco named AHCF VP
We are very pleased to announce that Gene Andrasco has been elected to assume the role of Vice President of AHCF. Gene has taken a very active roll with the Foundation since his daughter Kiley was diagnosed with AHC. (more…)
Tax Strategies for parents with Special Needs Kids!
Did you know that with the new Health Care Law there are some significant tax implications for special needs families?
Did you know if you come to the AHCF Family Meeting you can deduct your admission and transportation costs? (more…)
Renee Hodes Joins AHCF Board
Please join me in welcoming our newest AHCF Board member Renee Hodes. Renee is mom to Marissa 24, David 16 and Lisa 13 who has AHC.
Renee has worked tirelessly through many fundraising campaigns and frequently calls the Foundation with useful ideas that will improve our service to the AHC families. She is currently on the Family Meeting committee. Always willing to share information and lend encouragement to any family she is 100% invested in finding a treatment and a cure for AHC while helping support the families along the way. You can reach Renee at firstname.lastname@example.org Welcome Renee!!
AHCF joins NORD to keep Orphan Drug Tax Credit in place!
“As organizations representing millions of American men, women and children suffering from rare diseases, we are writing to express our strong support for the Orphan Drug Tax Credit (ODTC). We know that Congress is developing tax reform proposals and we strongly urge you to keep this critical tax credit in place.” (more…)