President
Medical Advisor to the Board
Vice President
Secretary
Treasurer
Board Member at Large
Heather is the Founder and President of the TUBB3 Foundation. Heather’s oldest daughter, Lani, was first diagnosed with a TUBB3 variant in 2015 while she was 6 and half years old after searching for answers and a diagnosis for years. At that time, Heather found little to no information or support for families. In 2017, Heather launched the TUBB3 Foundation with the support of other families who have children with a TUBB3 variant, in hopes of finding more support and information for families affected. Heather works as the Family Support Coordinator for the Iowa Deafblind Project and for the Iowa Early Hearing Detection and Intervention (EHDI) program, helping families who have a child who is deaf/hard of hearing/deafblind connect to resources and support after receiving a diagnosis. Heather has served on several non-profit organizations in different roles as well as many advisory boards for organizations relating to medically complex children. She currently resides in Iowa with her husband, Robert, and four children. She is passionate about supporting and connecting families affected by TUBB3 variants.
Samantha lives in Streetsboro, Ohio with her husband, Eric, and their daughter, Cassie. Samantha was a small business owner prior to Cassie’s epilepsy diagnosis in October of 2020. Now, she spends her time caring for her family and advocating for awareness, research, and fundraising for the TUBB3 community. Cassie’s neurological symptoms began showing intermittently in the Summer of 2019, shortly before Cassie’s 2nd birthday, and increased gradually over the next year when they received Cassie’s epilepsy diagnosis. In January of 2022, Cassie’s genetics test revelaed a micro deletion in her TUBB3 gene, and by late 2023, all other known possible conditions were ruled out with the results of whole genome sequencing. Their journey has driven Samantha to want to help patients and caregivers receive better information, better treatment options, and quicker diagnosis.
Katie holds a B.S. in Finance and Accounting from Boston College and an MBA from the Tuck School of Business at Dartmouth. Katie has worked in the biotechnology industry for the past 15 years and lives in the Boston area with her husband and their three children. Katie, as a board member, wants to apply her experience and know-how to help further the goals of the foundation to the benefit of all TUBB3 patients and families. She is inspired to be a catalyst for change within the TUBB3 community based on her personal experiences in her family.
Cailin lives in New Hampshire with her husband and two children. Her oldest daughter, who is now 6 years old, was diagnosed with a TUBB3 variant in 2019. The diagnosis was the final piece to the puzzle that started when she was born, when she failed her newborn hearing test. The journey to diagnosis often felt lonesome, often leaving many questions for Cailin and her husband, and feeling that they didn’t have others that could relate. Once receiving her daughter’s diagnosis, Cailin’s mother-in-law found the TUBB3 Foundation Facebook group. Reading others’ stories and experiences helped Cailin to talk about the diagnosis and journey with others both in and out of the TUBB3 community. She is passionate about helping others to find the TUBB3 Foundation and continute to build on the community that has been created.
Lilly is a registered nurse with a former career as a school nurse, however, she no longer practices nursing. Instead, she substitute teaches and volunteers with many organizations within her community. She resides in Illinois with her husband and two children. Her daughter, Kinley, was diagnosed with a TUBB3 variant at 6 years old after years without a diagnosis. Lilly’s drive to be a part of the TUBB3 Foundation is to help raise awareness of TUBB3 variants.
Brenda has been working as a genetic counselor in Boston, MA for over 20 years. She attended Williams College where she first became interested in genetics. She spent several years doing basic research in laboratories in Oregon and at Dartmouth College before receiving her Master’s in Genetic Counseling from Brandeis University. She appreciates the opportunity to work in the rare disease setting around novel gene identification. Assisting patients, families, and health care providers with understanding complex and life-impacting neurogenetic diagnoses, including TUBB3-associated conditions, is why she became a genetic counselor.
Meetings:
Meetings are held bi-monthly. See below for past meeting dates and minutes. Contact board president to request minutes further back than 1 year.
TUBB3 Foundation is a proud member of the Global Genes Global Advocacy Alliance!
