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stephen henderson, ed. d, raising awareness for rare neurological disease

10/06/2020

stephen henderson, ed. d, associate professor and chair of the william penn university education division was recently named to the board of directors for the alternating hemiplegia of childhood foundation (ahcf). this national charity has become a lifeline for henderson and his family as their youngest child, estella, was diagnosed with ahc at six months of life.

ach is an ultra-rare neurological disease that affects roughly 1 in 1 million children. estella is one of four cases in the state of iowa. ahc causes moments of paralysis, uncontrollable muscle movement, uncontrollable eye movement, intellectual disabilities, behavior disorders and difficulty walking. while this is a dire diagnosis, there is hope for a cure. doctors and researchers believe there is a viable option through gene therapy, but this research is expensive. building awareness and securing donations to reach their mission of ending ahc is the foundation’s top priority.

dr. henderson and his family; wife lacey and proud siblings, elena, william and adriana, have had many ups and downs as they face estella’s diagnosis. daily life has been drastically changed, as episodes are inconsistent and can appear at any moment. their involvement in the ahc foundation has given them a very clear sense of purpose as they work to find a cure. the “one million steps to a cure to end ahc” walk held this past weekend to raise funds and awareness for the disease and a cure. for more information on their efforts to end ahc, you can follow estella’s story on facebook at: end ahc for estella.

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