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…)
Vanderbilt opens AHC Clinic
The AHC Foundation is thrilled to announce the opening of the AHC Clinic at Monroe Carell Jr. Children’s Hospital at Vanderbilt. Under the Direction of Dr. Kevin Ess, Chief of the Division of Pediatric Neurology, the clinic will offer multidisciplinary care to children suffering with AHC. (more…)
Recent AHC related articles
Due to the advent of next-generation sequencing, the field of AHC genetics has been evolving very rapidly over the past two years. Over the last month, five very noteworthy articles were published. Great work is being done to advance the science behind AHC and we are very grateful to the many physicians and researchers taking on this important work. (more…)
AHCF granted GuideStar Bronze seal
AHCF is pleased to announce that we have met the requirements and been granted the GuideStar Bronze Seal. Look for us to attain the silver seal in the next few months and then it’s Gold!! (more…)
University of Chicago adds ATP1A3 fact sheet to website!
The AHCF is pleased to share some exciting news with our AHC community!
The University of Chicago recently added an information fact sheet to their website titled, “ATP1A3 Analysis for Alternating Hemiplegia of Childhood.” http://bit.ly/1aYQ3ZY The information sheet is a wonderful explanation of genetic testing for AHC patients. (more…)
2014 AHCF Family Meeting – Minneapolis Minnesota!
The Alternating Hemiplegia of Childhood Foundation Family Meeting will be held at the Hilton, Minneapolis/St Paul Airport, Mall of America www.mspairport.hilton.com The meeting will take place June 26th – 28th. (more…)
New AHC Article
The AHCF extends our congratulations to Dr. Sasaki and his colleagues on the publication of their article, “Genotype-Phenotype Correlations in Alternating Hemiplegia of Childhood.” (more…)