Our team recently participated in board training and a mid-year strategic planning session. Due to COVID-19, both of these sessions were held virtually rather than in person as we had hoped. Like most organizations, our small nonprofit is feeling the impact of this pandemic but we are adjusting as necessary to ensure we continue to be able to fulfill our commitment to those living with a hypothalamic hamartoma.
During our session, we reflected on the recent Hope For HH 10th Anniversary and how we want to push support, research, and awareness initiatives in the next 10 years. There is still lots to do and we can’t do this alone. We need others to be inspired to join us. As part of our training, each board member was asked to describe their ‘Why’. Why do you support Hope For HH? Why do you volunteer your time? Why is Hope For HH important to you and your family? Why do you feel it is important to be an active member of the board of directors?
Today we share Kimberly Ranson’s ‘Why’. Kimberly joined the board in 2019 and holds the position of Treasurer. Kimberly is an HH advocate for her son and for the entire HH community. Before joining the team, the Ranson family had been supporting Hope For HH through spreading awareness, volunteering at patient conferences, and supporting our various fundraisers. We are so grateful to have Kimberly as part of our board and appreciate the time she dedicates to our mission. We hope you are inspired by Kimberly’s story or by the story of one of our other volunteers and consider giving your time and skills to help Hope For HH continue its focused service to those living with HH.
This Is My Why
“You need to teach him to run away.”
Such simple words yet they meant so much to me when I heard them from another HH mom back in 2015. It was the first time we had attended a family forum organized by Hope for HH and it was the first time I really felt like I was with a group of people who ‘got it’. They understood that, unfortunately, it was the sibling who needed to be taught to run away when your HH child experienced an unexplained rage episode and became violent. They knew time outs, redirection, and other strategies didn’t work – they didn’t blame our parenting. They spoke the same language of hamartomas, gelastic seizures, MRI protocols, and misdiagnosis.
We learned more about our son’s condition and possible treatments in those few days than we had since our son had been diagnosed a year earlier. Thanks to Hope for HH we were able to not only connect with other families but with medical professionals who had a wealth of experience and knowledge to share. This connection, both to other families and to medical support, is why I volunteer for Hope.
This connection, thanks to my volunteering, has grown stronger and has gotten me through some hard days. And it’s this connection that truly gives me hope for a successful treatment and a good quality of life for our son.
What is YOUR ‘Why’
We want to hear from YOU!! Why do you support Hope For HH? If you’d like us to share your ‘Why’ with the HH community send an email to ewebster@hopeforhh.org.
Inspired to join the team? Send an email to ewebster@hopeforhh.org for more information
