19 Nov Meet Maureen Grover, TESS Family and Community Advisor & SLC13A5 Parent
Q: What is your role at TESS Research Foundation?
I am a part of the Family and Community Advisors group. I have two children with SLC13A5 Deficiency, so I know how critical our TESS mission of improving the lives of families with SLC13A5 Deficiency is. I volunteer my time by serving as the moderator of our private Facebook page, which is just for families with SLC13A5 Deficiency.
Q: How does the work you are doing have the potential to help those with SLC13A5 Epilepsy?
I believe when people have the chance to communicate that’s always good. There are families that are newly diagnosed and have no idea what to expect. These families can join our private group and see the progress of older children. They can ask questions about medications, therapies, etc. Having a special needs child or children is incredibly lonely. This group helps the families realize that they are not alone and that we are all dealing with similar issues.
Q: What inspires you to contribute your time and skills to TESS?
My babies inspire me. Plus, I love when I introduce a new family to our group, and the established members greet them as family. We have a beautiful group of people, and I enjoy watching videos and seeing pictures of their children.
Q: Have you learned anything through your work with TESS Research Foundation that you’d like to share?
I have learned that you have to be patient. I know that scientists are working at warp speed to find better treatments, but it is never fast enough for a parent. It may be that the work we are doing will mostly help future families and not necessarily be able to help my children, but if the TESS Foundation can help the tiny babies in our group, that is worth it to me.