Impact of Tuberous Sclerosis Complex Fundraising

Think all those fundraising walks you see advertised don’t help? Think again! Shelly Meitzer, the mother of two children with tuberous sclerosis complex (TSC), a rare multi-system genetic disorder, has living proof they do!

Tuberous sclerosis complex can cause benign tumors to form in the eyes, brain, kidneys, heart, and lungs. It can lead to intellectual disabilities. Additionally, it is the leading cause of epilepsy and autism.

Shelly is a volunteer, parent, and Walk chair for the Tuberous Sclerosis Alliance’s Step Forward to Cure TSC. She shares that two of her children have TSC. Shelly’s teenage daughter, Ashlin, is severely affected and has a tumor in her kidney and brain. Also, Ashlin has a developmental delay, intellectual disability, and limited verbal ability. This means that she will require assisted care for the rest of her life.

Shelly’s son Mason is 2.5 years old. He has recently celebrated a year without seizures due to the two medicines he is taking. At this point, he is developmentally on target. He is walking, talking, and doing everything a typical toddler would be expected to do. A huge part of this has to do with what has been learned from research funded, in part, by the fundraising walks. Shelly believes that research has made a huge difference in his quality of life versus his sister. So much progress has been made over 14 years and this is why the event was so important.

Last May, The 2016 Step Forward to Cure Tuberous Sclerosis was held in Wyomissing, PA. This was a day that focus families coming together and raising dollars for research.

Click here to watch Shelly’s video.

Visit the Tuberous Sclerosis Alliance website to donate or find an event in your area.

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