Local Child With Rare Disease First Patient At New Duke University AHC Clinic
FOR IMMEDIATE RELEASE
CONTACT: Jeff Wuchich
CELL: (919) 412-1870
Local Child With Rare Disease First Patient At New
Duke University AHC Clinic
New Hope Offered To Children Suffering With Alternating Hemiplegia of Childhood
RALEIGH, NC, March 6, 2013 – Five year old Matthew Wuchich of Rolesville, NC will be the first patient evaluated at the new Alternating Hemiplegia of Childhood (AHC) Multidisciplinary Program and Clinic founded by Duke University. Matthew suffers from this permanent and rare children’s disease which is a painful neurological disorder that causes attacks of temporary paralysis that can last minutes or days. AHC is often misdiagnosed as cerebral palsy or epilepsy and has no cure. According to Jeff Wuchich, President of Cure AHC and father to Matthew, “It is estimated that over 90% of kids worldwide with AHC are undiagnosed which means that thousands of children are receiving the wrong care or none at all.”
Wuchich founded Cure AHC in January, 2013 on the heels of Dr. David Goldstein, PhD, Erin Heinzen, PhD, & Mohamad Mikati, M.D. at Duke University isolating the gene responsible for the majority of AHC cases. The groundbreaking discovery offered new hope to the global AHC community for more effective treatment and ultimately a cure for Alternating Hemiplegia of Childhood. By bringing together the brightest minds in research and medicine with the passionate commitment of AHC families in collaboration and in unity of purpose to improve the lives of all AHC sufferers, Wuchich is blazing trails on many fronts. Wuchich attended the Brussels AHC Symposium in November, 2012, the Rare Disease Lobby Day in Washington, DC in February, 2013 and launched his charity Cure AHC, whose mission is to raise awareness, forge global relationships with both the medical and AHC family communities and to raise funds needed for research grants and family support efforts.
The Duke Alternating Hemiplegia of Childhood program brings together specialists from various disciplines such as Behavior, Cognition & Learning, Motor Skill Development, Nutrition, Neurology and others. There are several benefits to AHC patients and their families that the Duke Clinic will provide and include comprehensive and tailored evaluations of the problems of these children to help them and their families better identify the problems they have. Patients will also receive a customized care plan to coordinate improved ongoing care with the AHC patientâ€™s local care professionals to maximize quality of life. Additionally, the clinic will provide for the collection of critical data for collaborative research to accelerate discoveries that may lead to the cure for AHC and educating families and local caregivers on how to collect needed data in preparation for clinical trials when and if potential treatments or cures are discovered.
Any AHC patient is welcome at the clinic. Cure AHC is working to provide ways to reduce cost of transportation and will also be able, on a limited basis, to help work with insurance companies for payment.Â Donations to fund family support to attend the Duke Clinic are welcomed at www.cureahc.org. For appointments or any other questions about the clinic, please visit the Duke AHC Clinic Site, call (919) 257-9940 or email email@example.com
About Cure AHC
Cure AHC, a non-profit organization was created in order to raise funds necessary to facilitate research aimed at treating and ultimately curing Alternating Hemiplegia of Childhood (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. Please visit www.cureahc.org and join our conversation on Facebook, Twitter and G+.
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