Stephanie Hallam

President

Stephanie Hallam is the co-founder and president of the POU4F1 Foundation and mom to two young children. Her oldest, Hadley, was diagnosed with a rare genetic disorder caused by a mutation in the POU4F1 gene. After facing the unknown with little guidance, Stephanie helped launch the foundation so other families wouldn’t have to go through it alone.

She’s passionate about advocating for her daughter and the entire rare disease community, with a focus on advancing research, building connections, and creating hope for the future.

Suzanne Martin

Vice President and Treasurer

Suzanne is a mother of two wonderful adult children. Her youngest daughter, Ellie, was diagnosed with her rare disorder at 23 years of age after many years of genetic testing, therapies, and educational interventions.

Since 2021 she has been involved in advocating and raising awareness for those diagnosed with Ataxia by meeting with legislators, fundraising, and leading support groups. She is very excited to be a founding partner of the POU4F1 Foundation to unite families and advance research. We are stronger together!

Kristell Silva

Secretary

Kristell is a stay at home mom of three – She is a special needs mom to two kids, Miguel and Julian, who was diagnosed with autism in 2023. She loves advocating for her kids and being their voice.

She is passionate in teaching them that being different is okay. As a family, they enjoy outdoor activities going to the beach, playing in the pool and spending time together.

Lisa Kohlhauff

Director of Marketing

Lisa is the proud mom of two incredible kids, Ellie and Maxwell. After Ellie was diagnosed with POU4F1-related ataxia in December of 2021, she became passionate about raising awareness and building community for families impacted by this ultra-rare condition.

With a creative spirit and a deep love for connection, her goal is to make the science understandable and the journey just a little bit brighter for every family that finds themselves here.

Lisa enjoys soaking up time with her family, finding joy in the everyday, and advocates for the importance of inclusion.

Ellie Martin

Communications Director

Ellie is graduate of Southern Illinois University in Carbondale, where she earned a Bachelor’s degree in Communications with a minor in Rehabilitation Services. After being diagnosed with POU4F1, she began advocating for rare diseases and raising awareness about her condition.

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Ellie is an active member of the EveryLife Foundation, serving as a Young Adult Rare Representative. In this role, she has advocated with  Senators and Representatives on behalf of individuals affected by rare diseases. Additionally, Ellie is a member of the National Ataxia Foundation, where she completed a six-month internship with the communications team. During her internship, she authored a series of 12 articles on rehabilitation services for people with ataxia.

Ximena Silva

Program Director

Ximena, originally from Chicago, holds a degree in Psychology from Florida Gulf Coast University. She has spent over a decade working in the real estate industry, where she has specialized in project management and strategic operations.

In addition to her professional career, Ximena has volunteered with several organizations, reflecting her commitment to service and community engagement. Her passion for the POU4F1 Foundation is deeply personal, inspired by her nephew’s diagnosis, and she is dedicated to supporting its mission to drive research and awareness for this rare condition.