Foundation Updates
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…)
AccountingDepartment.com Announces Support Of Rare Disease Day 2014
AccountingDepartment.com, long time supporter and fund raiser for the Alternating Hemiplegia of Childhood Foundation, announced support of Rare Disease Day on February 28, 2014.
Thanks to Bill Gerber AccountingDepartment.com co-founder for another great awareness article for Sean and AHC. (more…)
Hodes’ featured in news story for Rare disease day
Paul and Rene Hodes, of Shrub Oak, hope raising awareness of AHC will help find cure is the title of a news story by channel 12 news of Westchester county, NY. The Hodes’ and their daughter Lisa were featured in a news piece to highlight rare disease day and bring attention to AHC.
New AHC article from the French Association
Congratulations to Dominique Poncelin and the French Association on the publication of their study regarding the burden of caregivers in AHC.
Caregiver’s burden and psychosocial issues in alternating hemiplegia of childhood Original Research Article: European Journal of Paediatric Neurology, Volume 17, Issue 5, September 2013, Pages 515-521 Jessica Save, Dominique Poncelin, Stéphane Auvin (more…)
Fundraisers
Texas Walk/Run – April 19th, 2014
Registration is open for the 5k run/walk being held in Edinburg Texas in honor of Luke Lopez and all the kids with AHC! http://ahckids.org/hope-for-luke-and-kids-walkrun-to-cure-ahc/
Texas AHC families and friends come on out and support the Lopez family, have fun and raise $$ for AHCF too!
Wilkinson Family raises $1000 in two fundraisers
Thank you to Faye Wilkinson and family and friends for your spaghetti dinner and the High School Interact Club Bracelet sale which netted over $1000 for AHCF in honor of Zach and all the kids with AHC! (more…)
Fire & Ice Chili Cook Off Feb 15!
Come support JoBoy’s Brew Pub and AHC Kids Foundation in honor of Chef Dwayne Spencer’s daughter Koryn Spencer. The cook off will take place at Warwick High School in Lititz, Pennsylvania on February 15 @ 11:00 AM. Great Food, lots of fun and a good cause! (more…)
Be Mine! AHCF February Fundraiser
Be a sweetie and lend a helping hand
The AHCF is hoping you can
We have some needs that we must meet
And we hope you can help accomplish this feat
See our list and help make it come true
And we will be so grateful to you! (more…)
Superbowl 2014 Charity Mania raises over $1600.
The Superbowl Charity mania raised over $1600 for AHCF. Thank you Paul Hodes and everyone who bought tickets! Congratulations to the winners! (more…)
