AHCF In the News

Shrub Oak family seeks funds for cure for daughter’s rare disease

Lisa:arcade

 

Local news article from the Hodes family about Lisa. Great job spreading awareness about AHC and AHCF!

 

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Gene Andrasco named AHCF VP

geneWe 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

renee and daughters

 

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 hodesr@yahoo.com 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…)

AccountingDepartment.com Announces Support Of Rare Disease Day 2014

accounting-department-logoAccountingDepartment.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.

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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

Vandy ClinicThe 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…)

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