Shelly Meitzler is an amazing, inspiring individual who's life took a challenging turn when she received a diagnosis of TSC in her oldest daughter in August 2001. Starting out in the ER with her seizing baby, Shelly and her husband had to weather the false accusations of shaken baby syndrome by hospital staff before receiving an official diagnosis. From here, she mentions that life as she knew it, was forever changed. Again in 2014, she received another TSC diagnosis in her young son.

We discuss the intricate challenges of having 2 individuals affected by TSC, and the varying impact due to the increase in understanding, better treatments, and knowledge in the space of time between diagnosis of her oldest daughter and younger son. She also has another daughter who is not affected by TSC. Shelly shares her unfiltered experience dealing with the intensity of managing the needs of her children & juggling a career, and how this impacted her mental health. She took a leap of faith, leave her former career so she'd be able to devote more time to her family and TSC case management.

"In January 2017, Shelly joined the team on as National Walks Coordinator; in September 2017, she joined the staff full time. Shelly has been involved with the TS Alliance for the past decade, including serving as both Community Alliance Chair and Step Forward to Cure TSC Chair in Delaware/Lehigh Valley. Last year, she delivered an inspirational speech at the TS Alliance Congressional Briefing on Capitol Hill chronicling her journey as a TSC mom to Ashlin and Mason. She is grateful to have an extended, supportive family that has helped navigate the journey of TSC and allowed her to be involved on various levels in the community. Shelly’s story has provided hope as ongoing TSC research has offered new insight over the last decade and solidified her determination to continue to advocate, educate, and raise vital research dollars for all those impacted by TSC. In her free time, she enjoys spending time with family and friends, laughing, enjoying life, and the occasional hockey game with her husband, Matt." (tsalliance.org)

There is not much that rattles this powerful advocate who above all else is devoted to her family, friends and work at the TS Alliance, improving the quality of life of those affected and working to discover a cure. In her own words; "I'm spontaneous, fun, love to be around people, love to make me people laugh. Nothing compares to being a MOM....love my kids more than anything. And will give everything but UP, to find a cure for Tuberous Sclerosis for Ashlin, Mason, and all those affected with TS!" Keep on keeping on Shelly! And thanks for the inspiration.

Shelly's links:
https://www.tsalliance.org/about-us/our-team/
https://www.facebook.com/shelly.richards.313
https://cdmrp.army.mil/cwg/stories/2017/shelly_meitzler_profile
https://www.linkedin.com › shelly-meitzler-054877160
https://twitter.com/momof2withtsc
https://www.readingeagle.com/life/article/wyomissing-mom-a-tireless-advocate-for-her-children
https://www.youtube.com/watch?v=V9IvFxonu6M