Photos and text used with permission of
Ms. Reiko Donato.
Reiko Donato's daughter, Alex, was diagnosed with tuberous sclerosis complex (TSC) at 12 months of age. Since that day, thirteen years ago, Reiko has been steadfast in her role as an advocate, both for individuals with the disease and for the family members and loved ones who struggle to help those with TSC.
A volunteer for the Tuberous Sclerosis Alliance (TS Alliance) for many years, Reiko is currently in her fifth year as a member of the organization's board of directors. She has also chaired the local chapter, Atlanta Area Community Alliance, and directed a major fundraising event, Atlanta Step Forward to Cure TSC, a walkathon that has raised nearly $1 million in the last 10 years. She has also served as the clinic ambassador at the Atlanta TSC Clinic at the Scottish Rite Children's Hospital. Every March, for the past several years, Reiko has traveled with other TS Alliance members to Capitol Hill to visit members of the U.S. Senate and House of Representatives to ask for their support of CDMRP's Tuberous Sclerosis Complex Research Program (TSCRP), so she was familiar with the program long before she was nominated and invited to serve on TSCRP's peer review panel. Reiko says it was wonderful to join the peer review panel and to experience the high regard consumers enjoy working alongside scientists and clinicians who want to hear the perspective of those who are directly affected by TSC. Reiko applauds the researchers and clinicians who are involved with TSC research and treatment of individuals affected by TSC. But she also attests to the wealth of information that consumers can bring to the table in terms of personal experience and knowledge, adding significantly to a more complete picture of the disease. Consumers find themselves not only asking questions of the researchers but sharing what they know with the researchers - describing the clinical manifestations of TSC, for example, or explaining the kinds of challenges faced daily by individuals with TSC and their families.
It is fitting that Reiko's leisure time is spent training for and competing in sprint, Olympic, and half-Ironman distance triathlons. Traits essential to Reiko's triathlon performance are also fundamental to advancing scientific research: Perseverance, determination, risk-taking, among others. In no small measure, these traits have been central to Reiko's role as an advocate, heightening awareness of TSC and promoting research to lessen its impact.
Last updated Wednesday January 27 2016