We are excited to announce Eric Traub will be joining Hope for HH as a volunteer on the Hope for Hypothalamic Hamartoma Finance and Operations committees.
A Little About Eric:
I am a finance executive, husband, and father of two daughters, Alanna and Lily. Alanna was diagnosed at age 7 in 2020 after a series of absence seizures led to an MRI which revealed the hypothalamic hamartoma (HH). After trying medication to treat her seizures, Alanna had laser ablation at Texas Children’s Hospital in 2020 and a second laser ablation in 2021. Both surgeries significantly improved her symptoms, but she still had she still had occasional seizures that interfered with school and everyday life.
In 2022, we started a modified version of the ketogenic diet. The diet, while a challenge at times, has helped Alanna tremendously. Her seizure frequency has significantly declined, and she has been able to return to school on a full-time basis and participate in outside activities like gymnastics, dance, and rock climbing. While we are grateful for Alanna’s progress, we know that there is still a small amount of her tumor remaining that could not be treated by laser ablation since it was so close to critical brain structures. We worry about what happens next if her seizures return and how to deal with the comorbidities associated with HH.
For the last three years, we have come to rely on Hope for HH as a place to educate ourselves, explore treatment options and connect with other families that have been affected by HH. My desire to volunteer for this organization is to bring my skills to support the organization as it continues the important work it does to be a critical resource to any family that is faced with HH. Although living with HH can sometimes feel like a marathon, through working together to bring awareness and expand knowledge of this condition, we can hopefully lead to a better future for HH families.
Want to make a difference? Join our Team.
If you are interested in becoming a volunteer for Hope for HH, to get the process started we invite you to complete the following Volunteer Inquiry Survey to gather a bit more info about you and your interests.