Community Advisory Board

Gavi is a fourteen-year-old high school freshman living with NM.

She joined the CAB to connect with others in the NM community, learn from their experiences, and share her own story.

In her free time, Gavi enjoys painting, reading, spending time with friends and family, and watching TV.

Alexandra Gresick is a 35 year old 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 23-year-old 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.

Enilton Neymakes is an English teacher living with NM in Valente, Bahia, Brazil.

He enjoys spending time with friends, traveling, and practicing foreign languages such as German, Italian, and French.

Enilton joined the CAB to share his experiences as an individual with NM, hoping to connect with and support other young adults. He is passionate about exchanging knowledge and contributing to research focused on finding a cure for NM.

Ali Reed is a middle school teacher from Dayton, Ohio, and the parent of Mason Reed, who is affected by NEB NM.

Outside of teaching, Ali enjoys reading, attending concerts, and creating memorable experiences with her family.

Ali joined the CAB with a strong belief in the power of knowledge and understanding to create a better world. Recalling the feelings of isolation and confusion she experienced after receiving Mason’s diagnosis, Ali is passionate about building a supportive community where parents of children with NM feel connected and empowered. She wants to ensure that families facing a new diagnosis never feel alone and have access to a strong support system from the very beginning.