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Miracles for Mary Nell

Marni Warren / CHD2 Awareness Day 2024

Our mission is to help spread awareness and raise money for research to find better treatments for epilepsy and ultimately find a cure for Mary Nell and others with CHD2-related disorders. 

Thank you with all our hearts, Marni & Mark

  • $14,155

    Raised

  • $15,000

    Goal

  • 20

    Supporters

  • 0

    Days Remaining

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About Miracles for Mary Nell

Mary Nell was diagnosed at 6 years old with epileptic encephalopathy after a sudden onset of seizures and our world turned upside down. We were told she would not have a normal life and she wouldn't amount to much. After failing 4 drugs and alternative treatments we scoured the country looking for answers. 

We found our answer three years later after a full exome sequencing genetic panel revealed that Mary Nell had a de novo (non genetic) mutation in her CHD2 gene causing her epilepsy, intellectual disability and other developmental abnormalities. We were told that it was so rare that there was no name, no prognosis and no protocol for treatment. We were devastated. 

Nonetheless, we immediately began our search for our own answers, a community and support. We have found that and more in the patient advocacy group, Coalition to Cure CHD2 (CCC). Marni was recently asked to serve as Co-President of CCC continuing the mission to support research, community outreach, advocacy and better treatments. CCC grows daily as genetics continue to dominate rare epilepsies and new treatments are on the horizon. Our goal is to continue to fund research to find better treatments and ultimately cure CHD2-related disorders! 

Therefore, funding research is critical to progress and we are raising funds for our first Meeting of the Minds roundtable in May 2024, inviting scientists from around the globe to come together, share their research, and chart a course for a cure. Please consider donating to CCC to help us achieve our mission! With your generous donation, please know that unequivocally, CCC and its volunteer board of directors, will use your funds wisely with the purpose of ultimately helping to improve the lives of our CHD2 loved ones.