For Immediate Release
Contacts: Jeff Wuchich, email@example.com, 919-412-1870
Lynn Egan, firstname.lastname@example.org, 650-796-1910
Cure AHC & AHCF Collaborate on Gene Therapy Research
Innovative AAV Project Aims to Treat Alternating Hemiplegia of Childhood
Raleigh, NC & Southfield, MI – Cure AHC and AHC Foundation, the world’s two largest organizations dedicated to the rare neurological disorder Alternating Hemiplegia of Childhood (AHC), are excited to announce a collaboration on an innovative gene therapy for AHC. Since June 2018, Cure AHC and AHCF have been working together with doctors and researchers to develop a cutting-edge Adeno Associated Virus (AAV) gene therapy. Cure AHC and AHCF are also pleased to be working with AHC associations from Ireland and the United Kingdom, with hopefully more countries joining the effort soon. In addition, Simon and Nina Frost have contributed significant funds to the AAV Project through their Hope for Annabel Foundation.
The AAV Project is an innovative approach for gene therapy using viral vectors to deliver functioning genes to compensate for the dysfunction of the mutated ATP1A3 gene that causes AHC in most patients. The AAV Project involves partnering university-based scientists with The Jackson Laboratory, a private lab facility headquartered in Maine, and Virovek, a private lab in California. Researchers from the United States and around the world are also assisting with this collaborative effort. By leveraging both university-based experts and private lab facilities, the AAV Project hopes to move faster towards a clinical trial and cure for the children and adults suffering from AHC.
“If this project is a success, it will be a realization of two key goals we’ve had since our inception – collaboration with other AHC organizations and rapid advancement towards an effective treatment,” said Cure AHC President Jeff Wuchich. “We are very excited to participate in a project that has the potential to change the lives of AHC patients and their families. We are hopeful that this is the first step toward fulfilling our mission to End AHC,” said AHCF President Lynn Egan.
Representatives of Cure AHC and AHCF have been meeting every other week to collaborate, plan and move the AAV Project forward. The effort is led by Simon Frost from Cure AHC and Meredith Schalick from AHCF, along with Jeff Wuchich and Tony Pena from Cure AHC and Lynn Egan and Joshua Marszalek from AHCF.
Cure AHC and AHCF have launched end of year fundraising campaigns to help support this venture, which has an estimated total cost of $750,000. Both Cure AHC and AHCF will also continue funding other projects and research efforts.
Cure AHC and AHCF are 501(c)3 non-profit organizations based in the United States that were created to raise awareness and research funds to develop a treatment and discover the cure for Alternating Hemiplegia of Childhood. Donations to Cure AHC can be made online at www.cureahc.org or sent to Cure AHC, Inc. at 8480 Honeycutt RD, #200, Raleigh, NC 27615. Donations to AHCF may be made at www.ahckids.org or sent to 2000 Town Center, Suite 1900, Southfield, MI 48075. For more information about Alternating Hemiplegia of Childhood (AHC) please visit www.cureahc.org , www.ahckids.org or contact email@example.com or firstname.lastname@example.org .
Basic Information about AHC
- AHC is a rare neurological disorder impacting 900 people worldwide. It is characterized by repeated, transient attacks of hemiplegia (whole-body or partial paralysis) that last for minutes, hours or even days. AHC commonly causes seizures and certain severe related complications, such as brain atrophy, developmental delays, choking episodes, dystonia (muscle stiffening or rigidity in extremities), ataxia (shaking and lack of coordination of voluntary movements), and nystagmus (shaking and uncontrolled eye movements).
- AHC episodes are often associated with triggers that precede or induce the attack. Triggers for AHC episodes may include environmental conditions (exposure to temperature extremes or wind), water exposure, physical activities (exercise, swinging), lights (sunlight, fluorescent bulbs), foods (chocolate, food dye), emotional responses (anxiety, stress, fright, excitement), odors (foods, fragrances), fatigue, and certain medications.
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