Community Advisory Board

Alexandra Gresick is an affected adult with Nemaline Myopathy. She lives in St. Louis, Missouri in the United States. In her career, Alexandra works as an administrative professional in the university setting. Outside of work, she enjoys learning about different cultures and languages, reading historical fiction and non-fiction, listening to music, and art projects. Alexandra has been involved with AFBS since 2022 and is grateful to be part of the Community Advisory Board. She hopes to help communicate with the medical and scientific community, patient populations, and community at large to help bridge the gap between patients and scientists and raise awareness of the unique complexities of navigating a rare disease. Here’s hoping to find a cure for NM!

Lucinda is an adult living with NM and currently resides in North Carolina, USA. She is pursuing a master’s degree in Anthropology with a concentration in Medical Anthropology. Her interests are diverse and include reading, drawing, watching Netflix, exploring nature, visiting museums, zoos, and aquariums, and learning about all types of science and history.

Lucinda has been a supporter of AFBS since 2013 when she attended her first AFBS conference. Motivated by a desire to contribute to the NM community and research progress, she joined the Community Advisory Board (CAB). She believes that elevating the patient voice is crucial to improving health outcomes, access to care and support, and ensuring research truly benefits patients. Lucinda hopes to provide insights and feedback to guide AFBS in effectively supporting the NM community and fostering greater community involvement.

Indira Moonsamy is a dedicated mother from South Africa, and the primary caregiver for her adult daughter who has Nemaline Myopathy.

When she’s not caring for her daughter, Indira enjoys reading, cooking, baking, gardening, and spending time with her husband, children, and dogs.

Indira joined the CAB to deepen her understanding of NM and better support her daughter. She also hopes to use her experiences to assist other families facing similar challenges. Indira is eager to stay informed about the latest treatments and research advancements in the pursuit of a cure for NM.

Harneet Sandhu is an affected adult living with NEB-related Nemaline Myopathy and a passionate advocate for the NM community. Currently pursuing a bachelor’s degree in criminology, Harneet brings a dedicated, thoughtful perspective to the Community Advisory Board.

Having navigated the unique lived experiences of an adult with NM, Harneet joined the CAB to ensure that AFBS programs and initiatives reflect the real needs of individuals and families. Driven by a desire to raise awareness, support research fundraising, and reduce the isolation that can often accompany a rare disease diagnosis, Harneet is committed to offering connection, empathy, and advocacy. In free time, Harneet enjoys gaming, arts and crafts, building LEGO sets, spending time outdoors, listening to music, cuddling with their dog, and spending quality time with friends and family.

Based in West Chester, PA, Staci Yoder is a devoted mother to her young son, Wyatt, who lives with ACTA1-related Nemaline Myopathy. Balancing her caregiving journey with a career as an Operations Project Coordinator in the security industry, Staci leverages her skills in precision and coordination to navigate the complex world of rare disease healthcare.

As a CAB member, Staci is driven to keep the patient perspective at the heartbeat of every project while offering a compassionate, guiding hand to newly diagnosed families. She actively tracks the latest medical research, emerging therapies, and mobility devices to empower her son and support the broader NM community. In her free time, Staci loves photography, ancient architecture, vintage handbags, and relaxing with Wyatt and their dog, Riggs Barklee.