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Matthew Jones

Who’s in your Family?

April (wife), David (3), Child #2 expected March 2022.

What do you want people to know about your family?

Both my son and I have CHARGE. I primarily have the hearing and balance issues. My son has hearing loss, growth, two open heart surgeries at Children’s, and a couple skeletal anomalies. We found out via Whole Genome Sequencing, and I actually got my diagnosis when my son did. Outside of CHARGE, I also help admin a NICU Dads Support Group Facebook group.

Why do you Volunteer with the Foundation?

I always enjoy going and doing, and my interactions with the Foundation

has always been positive. I saw that Alabama didn’t have anyone assigned to it as a liaison, so I wanted to take the opportunity. I’ve also learned, and continue to learn so much about CHARGE as time goes on. I enjoy the networking as well.

What activities do you like to do?

A little of everything. I run ultramarathons, hiking, martial arts, woodworking. I’ve been an area director for Toastmasters, and occasionally enjoy Root Beer and video games. My son’s favorite hobbies are cars, mickey mouse, and general outside shenanigans. ☺

To contact your state’s Family Liaison, or if you are interested in becoming a Family Liaison, please email Lourdes Quintana at Lourdes@chargesyndrome.org.