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Heather is the Founder and President of the TUBB3 Foundation. Heather’s oldest daughter, Lani, was first diagnosed with a TUBB3 mutation in 2015 while she was 6 and half years old after searching for answers and a dianosis 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 mutation, in hopes of finding more support and information for families affected. Heather works as the Family Engagement Coordinator for the Iowa Deafblind Project as well as the Family Support Coordinator for Iowa Early Hearing Detection and Intervention (EHDI). 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.
Samantha lives in Stow, Ohio with her husband, Eric, and their daughter, Cassie. Samantha was a small business owner prior to Cassie’s diagnosis in 2020. Now she spends her time caring for her family and advocating for awareness, change and fundraising for the Epilepsy and Rare Disease communities. Cassie’s neurological symptoms became apparent shortly before her 2nd birthday in the summer of 2019 and as of Spring 2022 they are still searching as of Spring 2023 for the root cause of most of her symptoms that can not be explained by her TUBB3 genetic deletion. Their journey has made Samantha eager to bring the same awareness and fundraising to the TUBB3 foundation and to hopefully 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 Nick and their three children. It is her son, Peter, who drives her to be a catalyst for change within the TUBB3 community. Peter was first diagnosed with a TUBB3 mutation in 2022 at the age of two. 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.
Lilly resides in central Illinois with her husband and two children. She is a registered nurse with a former career as a school nurse. She loves to travel and spend time with family. Her daughter, Kinley, was diagnosed with TUBB3 at 6 years old after years of searching for answers. Kinley has a de novo TUBB3 mutation, meaning that it was not inherited from either parent. Kinley enjoys being on a Special Olympics team for playing many sports and Girl Scouts. Lilly’s drive to be a part of the TUBB3 Foundation Board is to help raise awareness of TUBB3 mutations and help families navigate getting a new diagnosis.
Leah works as a Certified Academic Language Therapist, with a special interest in students with complex needs. Her current work follows stops in academia, healthcare, and publishing. Her most valuable education so far has been 18 years of parenting and advocating for a son with TUBB3 and an additional significant mutation. She lives in Texas with her two children. Leah is also a rare condition self-advocate and a service dog partner of 10 years. She believes that parents and patients are a rich and underutilized source of expertise in rare diseases.
Meetings are held quarterly. See below for past meeting dates and minutes.