When my son, Gregory, was diagnosed in 2016 at six months old, I was motivated to learn everything I could about CDKL5 and I was desperate for hope. I am so thankful I found the IFCR!
Helping to support our cause is very meaningful to me. I started in 2018 with a collaborative art project that I do with my son called “Art for Hope Love Cure.” It has been such fun to have something special that we can do together while at the same time raising awareness and funds for the IFCR. In 2019, I was privileged to be a panelist at the CDKL5 Patient-Focused Drug Development meeting with the Food and Drug Administration (FDA).
I joined the IFCR Board of Directors in 2020. I’m proud to serve the CDKL5 community! I lead the IFCR’s communications and marketing efforts, including social media. I chair both the Fundraising Committee and Awareness Committee now “IFCR Superfan Club.” I’m also a trained Family Support Representative (FSR). Volunteering alongside other dedicated CDKL5 families in my work with the IFCR is an honor. Together we are making a difference for CDKL5!
My son endures daily seizures and has significant developmental disabilities. Nothing is more important to me than finding a treatment that can help him and all of our children.
I have a BA in Human Services from Elon University and a MSW from the University of North Carolina at Chapel Hill. Before staying home to care for my son, I worked as a school social worker. I live with my husband, Jeff, and our son, Gregory, in Connecticut.
Please follow our art project @ArtForHopeLoveCure on Facebook and Instagram or online at https://artforhopelovecure.wixsite.com/cdkl5.