About the Presenters
David Tillman
David Tillman is the proud parent of three wonderful human beings — Miles, an 8-year-old living with Fragile X syndrome, and his two adult sibling advocates, Mary Haven and Teagan. Miles and David enjoy playing musical instruments, singing show tunes as loudly as possible, and hiking nearby Raven Rock State Park.
David is the chair of the Department of Public Health at Campbell University, and his professional career is focused on health equity and innovation. He has served on the Executive Council for Disability and Health with the American Public Health Association and has published and presented on a variety of topics related to inclusiveness and equity in health care.
In the Fall of 2020, David created the Xtraordinary Miles Campaign and ran a marathon completely barefoot to raise awareness of Fragile X syndrome and raise funds for NFXF. In Fall 2022, he repeated the effort and ran an ultramarathon. Prior to joining the NFXF Board of Directors, David was already involved with the foundation, participating in Advocacy Day, attending the International Fragile X Conference, serving as a consumer reviewer representing NFXF for the Congressionally-Directed Medical Research Program, and as a parent advocate during the Patient-Focused Drug Development Meeting with the FDA.
“The National Fragile X Foundation immediately connected me to a supportive community from the first moments of learning of Miles’ diagnosis … joining the board is an opportunity for me to contribute to strengthening this community as we share stories, share resources, share research, and work toward a better future for folks affected by Fragile X.”
Jack Fishman
Jack is a Senior Research Scientist at NASA Langley Research Center. He and his wife Sue have two adult sons ages 46 and 49 who live with Fragile X syndrome. They live in St. Louis, Missouri.
Sue Fishman
Sue and her husband Jack have two adult sons, Jason and David, who live with Fragile X syndrome. They live in St. Louis, Missouri.
Marcella Almeida
Marcella and her husband are parents to four incredible children – three of whom have Fragile X syndrome. They received a diagnosis in 2022, and dove right in. The Almeida family pledged to raise awareness of Fragile X, including support for their local community and participation in NFXF events like the 19th NFXF International Fragile X Conference and X Strides. Known as the Little Rhody Warriors, they are quite the force to be reckoned with!
Jen Barber
Jen is a registered nurse with 20 years of experience in the emergency department and am currently finishing my Doctor of Nursing Practice degree as an Acute Care Nurse Practitioner. She is a mom to three amazing kids—Nate (17) and Rylee (16), who both have Fragile X syndrome, and Finley (9)—along with their beloved Goldendoodle, Bristol (7). Jen’s family received their Fragile X diagnosis in 2010, shortly after Rylee was born. Like many families, they were suddenly faced with a lot of questions and uncertainty. She quickly connected with the National Fragile X Foundation (NFXF), which became an invaluable source of education, support, and community.
Wanting to give back and help other families navigate their own journeys, Jen became a Community Support Network Leader and later joined the NFXF team in 2019. Her experiences as both a parent and healthcare professional have fueled her passion for advocacy, education, and supporting individuals and families affected by Fragile X syndrome.
Outside of work and advocacy, Jen serves on the board of the Rochester Raiders Booster Club, which supports varsity adapted athletics. In her free time, you can usually find her biking, hiking, boating, gardening, reading, playing softball, or cheering on her kids as they participate in their many activities.
Rebecca Shaffer
Rebecca Shaffer, PsyD, HSPP, is a professor of pediatrics at Cincinnati Children’s Hospital, and she specializes in both clinical care and research with Fragile X syndrome and autism spectrum disorder. She is also the director of psychological services for the Cincinnati Fragile X Center. Her research is primarily focused on emotion dysregulation in both FXS and ASD. She enjoys helping individuals find ways to calm their bodies and minds and fully engage in the world around them. She also enjoys helping caregivers find ways to best support them in this process. “It is truly a pleasure to work with the Fragile X population and their families.”
Missy Zolecki
Missy joined NFXF team in 2018 after being an active volunteer since 2010. Missy organized several fundraisers and educational workshops while serving in her volunteer role. Missy is the mother of three children. Her eldest son, Matt, lives with Fragile X syndrome. Prior to joining the NFXF team, Missy had worked as a nurse for more than 20 years. She enjoys traveling and spending time with family and friends.
