Clara STRONG

Jessica McCrea / CHD2 Awareness Day 2026

Support of the Coalition to Cure CHD2 (CCC) is crucial to connect CHD2 families, engage researchers in the scientific community, and align our combined efforts to FIND A CURE!

  • $9,108

    Raised

  • $3,000

    Goal

  • 102

    Supporters

  • 27

    Days Remaining

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About Clara STRONG

In April 2025, just weeks before Clara’s fifth birthday and shortly after returning home from a magical family trip to Disney, our world changed forever. Clara began experiencing terrifying seizures that landed her in the hospital multiple times. We soon learned she carries a rare genetic mutation called CHD2, which causes a severe, drug-resistant form of epilepsy. She was also diagnosed with Lennox-Gastaut Syndrome, a rare and devastating epilepsy, alongside developmental delays and other medical challenges we were already working hard to manage.

In December 2025, Clara underwent surgery to implant a Vagus Nerve Stimulation (VNS) device in hopes of reducing her seizures—though it will take another 6 to 12 months before we know how effective it may be. Today, Clara takes six medications every day, twice a day, and despite this, she still experiences seizures most nights of the week.

Through it all, Clara remains the happiest girl we know. She is sweet, thoughtful, endlessly funny, and remarkably resilient. She brings constant joy to our home and has the biggest heart—especially when it comes to her family and her beloved collection of more than 50 stuffed kitties. Clara’s strength inspires us every single day, and we are fighting with everything we have to give her the healthiest, happiest future possible.  

The Coalition to Cure CHD2 (CCC) is a parent-led advocacy group that was formed to raise awareness of the disorder and raise funds to support research to find a cure.  CCC carries out its mission by providing competitive research grants; encouraging collaboration between researchers; convening professional advisors; and providing information to families and clinicians through seminars, symposia, publications and its website.  Our team Clara Strong is raising awareness of CHD2 and fundraising to accelerate research to find new treatments.  

Please consider donating to this cause so we can help Clara and others like her reach their full potential.  You can make a secure donation now by clicking the donate button on this page or you can send a check directly to the CCC.  Your generosity and support makes this progress possible and gives our family hope for Clara. Thank you from the bottom of our hearts! 

For more information visit: www.curechd2.org

Checks can be made payable to "Coalition to Cure CHD2” and mailed to Shawn and Jess or the address below: Coalition to Cure CHD2, Attn: Development, 302 E. Ogden Ave, Naperville, IL 60563