Hope4Harper
Hope4Harper is a grassroots organization designed to provide hope to those living with CDKL5 deficiency and other seizure disorders by fostering awareness and supporting research. We share information about CDKL5, life as special needs family, life as a bereaved family, and how we keep moving forward. As the first to use industrial hemp extract (cannabidiol or CBD) for medicinal purposes, we advocate for its use, and have helped shape the public view on it's benefits, paving the way for other countries to make legislative changes with regards to CBD. We are advocates for organ donation for scientific research. We promote the immeasurable sacrifice made in the name of HOPE for those waiting for disease relief. We are comfortable being uncomfortable.
Founded
2012
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CARROLLTON
Hope4Harper | Hope for a Cure OUR MISSION Hope4Harper is a 501c3 not for profit organization created to provide hope through research and awareness to those living with CDKL5 disorder and other related diseases. CDKL5 Research Harpers legacy carries on hope through research. Our research is symptom related and has the potential to create treatments for symptoms associated with several of the 7000 Orphan Diseases not just CDKL5. Our specific project list can be viewed on our research page.
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CARROLLTON
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HOPE for Epilepsy is a charity dedicated to supporting and connecting families with children that have been affected by Epilepsy living anywhere in the UK.
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CDKL5 is a rare x-linked disorder, resulting in early onset refractory epilepsy and severe neuro-developmental impairment.
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