Becoming a mother, I knew my life would change, but I never imagined the extent of change that was to take place. My three-year old son, Billy, has tuberous sclerosis complex (TSC). I first heard about TSC when I was 32 weeks pregnant, when cardiac tumors, called cardiac rhadomyoma, were discovered during an ultrasound. That fateful day set my life on a course of change, discovery, heartbreak, and the most amazing sense of pride and purpose.
I quickly channeled my stress and fear into action, becoming a strong advocate for Billy’s medical care, even before he was born. As an attorney (complex commercial litigator), advocacy is what I do for a living; I felt like there had to be more that I could do and that there had to be some other “greater” reason for his diagnosis.
I first learned about the Tuberous Sclerosis Research Program (TSCRP) in early 2016, when I was home on maternity leave. I saw social media posts about parents, caregivers, and individuals with TSC gearing up to attend the “March on Capitol Hill” event and I immediately knew that this was an event I wanted to take part in. Learning about the TSCRP and the Tuberous Sclerosis Alliance’s (“TS Alliance”) March on Capitol Hill gave Billy’s diagnosis that added meaning. I knew then that he and I were destined to be a part of the TS Alliance grassroots advocacy efforts. Since 2017, Billy, myself, and our family have participated in the March on Capitol Hill, travelling to Washington DC and meeting with Nevada’s congressional delegation. We will be making this trip every year for as long as we are able. Being a part of this amazing event with so many phenomenal volunteers, family members, individuals with TSC, researchers, and clinicians from across the country is a tremendous honor.
Seeing (and later participating) in this event inspired me to get involved in other ways as well. I am currently on the Executive Board of Directors of the Tuberous Sclerosis Alliance, serving as Secretary, a member of the Community Outreach, Government Relations, and Science & Medical Board committee, and a member of the TS Alliance Biosample Repository Steering Committee. I also serve as the Co-Chair of the TS Alliance of Nevada, where I provide resources, support, and information and plan social events for my local Nevada TSC community. In 2017, I had the privilege of joining other parents, caregivers, and individuals with TSC on a Patient Focused Drug Development panel with the Food and Drug Administration. With the support and volunteer efforts of my amazing family and friends, I serve as the Chair of an annual TS Alliance fundraising walk held in Reno, Nevada. In addition, I volunteer for the TS Alliance’s education parent mentor program assisting local TSC families with their Individualized Education Program process.
Last year, I had the honor of being nominated by the TS Alliance to serve as a consumer reviewer on the TSCRP peer review panel. Participating on the peer review panel required hard work, dedication and commitment, and it was truly amazing. I cannot wait to do this again (and again and again). One of the most rewarding parts of this experience was the panel itself: the respectful and thoughtful conversation and the wealth of knowledge, both scientific and personal, all coming together for a unified purpose. The feedback and appreciation I and the other consumer reviewer received during our time on the panel was heartfelt and sincere. The scientific reviewers were incredibly grateful that we shared our experiences with them, helping to provide meaning and context for all of their hard work. They respected our contribution to the process immensely, and us likewise. Their commitment to the research motivates the TSC community to go out and advocate for this funding, and our passion and experiences living with TSC motivate the researchers to continue to do their work, with the joint goal of better understanding the pathogenesis and manifestations of TSC in order to improve the lives of individuals with TSC.
Together, we’ll give everything. But up.
Last updated Tuesday, May 7, 2019