Kathy Jensen joined Hope for Hypothalamic Hamartomas in 2013 as a volunteer and transitioned to a board member in 2015. Her decision to join Hope for HH stemmed from her passion to be an advocate for her son and other families impacted by this rare syndrome, as well as her drive to take an active role in changing the diagnosis and treatment of HH Syndrome! She did this and more through sharing her family's story, leading critical projects, and connecting with other families that needed information and support!
Kathy's vision to help improve the information and support to families heading to surgery was the catalyst for launching our Surgical Care Bag program in 2017. In partnership with Texas Children's Hospital, Phoenix Children's and Seattle Children's, we have been able to provide over 100 families from around the world with these comfort bags.
In addition, Kathy's role as Director of Support was key in the planning and execution of Hope for HH patient conferences, educational webinars, and professional symposiums over the past 10 years. She worked each day with a focus on how to help those living with HH, as well as HH caregivers. We are so grateful for her insight, ideas, dedication and advocacy for Hope for HH during her time on the board.
Please join with us as we extend our gratitude for her tireless work for our Hope for HH community and wish her the very best as she moves on to the next adventure!
