Cure AHC envisions a world where Alternating Hemiplegia of Childhood (AHC) no longer robs its sufferers of the chance to participate fully in life. We seek a time where no case goes undiagnosed for lack of awareness. We believe that collaboration is critical for those suffering now, and for those yet to come.
Cure AHC was created in order to raise funds necessary to facilitate research aimed at treating and ultimately curing AHC. We do this by partnering with physicians and organizations worldwide and supporting families who live with AHC every day. By bringing together donors, researchers and families we believe a cure for AHC is within reach.
Who Do You Serve?
We are an international organization that serves families that have a child or adult with AHC. We also help families who suspect their child may have AHC get a yes or no answer. We raise awareness in the medical community and help drive funds for research to cure this debilitating disease. What is AHC like? Well, it is a very complex disease. We have found describing it in terms of more familiar diseases to be helpful. AHC creates:
- Movement problems like Cerebral Palsy
- Learning challenges like autism
- Behavioral issues like ADHD
- True Epilepsy in at least 50% of cases
- Bouts of temporary paralysis that last for minutes to days at a time
- And is currently incurable and essentially untreatable
In other words, AHC is very debilitating and heartbreaking! There is a spectrum of severity, with ranges from fully wheelchair-bound individuals to those who are able to live semi-independently. AHC sufferers, despite these challenges, are very determined and good-spirited children and adults. Their parents are truly exceptional people, managing a dizzying array of medical appointments, therapists, case workers, teachers, medical equipment providers, and other caregivers.
On the heels of the first Symposium on ATP1A3 in Disease in Brussels, Belgium, in December 2012, Cure AHC formed in February 2013. We launched our website in March 2013 and worked with Duke Children’s Hospital to establish the first-ever Multi-Disciplinary Clinic for AHC. The clinic saw eight patients in 2013 and has seen 21 more already in 2014. We raised just under $50,000 in 2013 and look to raise more than that in 2014. We were major supporters of the second and third symposiums (in Rome 2013 and the Netherlands 2014), and will be the host in the United States for the fourth in 2015.
Our proudest accomplishment is that despite the fact that we are new, we have already made a very positive contribution to the research efforts. We have funded projects at Duke Children’s Hospital to create mouse models of the two main ATP1A3 mutations responsible for AHC, and have funded the Center for Human Genome Variation at Duke to begin a Multiple Electrode Array study of mouse brain slices to screen for candidate compounds that could possibly treat and/or cure AHC.
Like many non-profits, our greatest need is funding. Research costs are high. We could be on the verge of breakthroughs that not only could help those with AHC, but also the many millions of people with epilepsy, heart disease and stroke. Because our disease is rare, however, it does not receive the interest, awareness and financial support it needs.
We plan to expand the AHC Clinic, to host the fourth Symposium on ATP1A3 in Disease, to expand the awareness programs we are doing globally to find the likely thousands of undiagnosed cases. This giving season we will feature our Give the Gift of a Cure Campaign where someone could win a trip to Playa del Carmen, Mexico, courtesy of Sunset World Resorts (some restrictions apply).