Photos and text used with permission of Marlo Grolnic.
Marlo Grolnic had never heard the words tuberous sclerosis complex (TSC) until she was expecting her son. Before he was even born, she was told that he may have TSC after a large rhabdomyoma was found in his heart. Since then, she has learned a lot about TSC. "Hardly a day goes by," she says, "that I don't think about it in some way."
Marlo promptly launched her education in TSC and began volunteering for the Tuberous Sclerosis (TS) Alliance. She became active in the community of individuals and families affected by TSC. "One of the most difficult things about TSC," Marlo says, "is dealing with the unknown. Even if things are fine right now, you never know what the future holds, so you're always living in a state of hypervigilance." She served for over five years as the chair of her local chapter, the TS Alliance of New England. During this time, as Marlo met more and more people involved with TSC, she saw firsthand how much giving and sharing went on among the many families involved in the TSC community, the local and national TS Alliance organization, and the researchers dedicated to understanding the disease. "Many of us feel that the silver lining of living with this disease is the friendship and support we've found in each other," she says.
Marlo's advocacy work brought her into contact with the Tuberous Sclerosis Complex Research Program (TSCRP) and she joined with others to advocate on Capitol Hill for continued federal funding for the program. Eventually, the TS Alliance nominated Marlo to serve with the TSCRP and she began her journey as a consumer reviewer of research applications submitted for future funding.
Marlo found the review process, "extremely well organized with plenty of resources to help understand how the program works and the steps involved in contributing as a consumer reviewer on a peer review panel." She described the TSCRP staff as, "very friendly and available to help with questions." Marlo also remarks on how exciting it is to see projects funded for TSC research on so many fronts. Moreover, she continues to be impressed with and grateful for the commitment of the scientific community to find a cure for TSC.
In addition to her passion for advocacy, Marlo, who has a degree in Biology, writes patent applications for a law firm, primarily for medical devices. She is also an avid reader and enjoys both fiction and non-fiction.
Marlo says, "Not everyone has the luxury of taking time away from work and family to participate in programs like the TSCRP as a consumer reviewer," but she believes that everyone in the TSC community has something to offer to each other, even if it's just "a sympathetic ear." As Marlo says, there are so many ways to serve and give back to others who are living with TSC, whether it is service with others locally, in one's state, or nationally. Marlo has seen the invaluable results of commitment and generous giving during her years of advocacy work and service with others. Fortunately for the TSCRP, consumer reviewers like Marlo, alongside scientist reviewers, continue to transform the future for all those affected by TS through research.
Last updated Monday, May 16, 2016