We are so happy to announce Laura Egeln has joined Hope for HH Fundraising Committee. Laura’s focus will be Development & Fundraising. If you are interested in fundraising and grant writing and would like to volunteer your time and expertise, please complete this form. A Little About Laura: In early 2002 when my daughter…
We are so happy to announce Aimee Deroin has joined Hope for HH Information Committee. Aimee’s focus will be working with individuals and families in our Hope for HH community to share their HH Journey. If you are interested in sharing your story please complete this form. A Little About Aimee: From a very…
We are so happy to announce Laurel Gallant has joined Hope for HH as a volunteer on the Hope for Hypothalamic Hamartoma Information committee. A Little About Laurel: In the medical world, your life can change in an instant. I want to help other Hope for Hypothalamic Hamartomas clients the way our family was…
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…
We are Mark and Kristy, first time mom and dad to Brett, age 18 months. We are relatively new on our HH journey, as Brett was diagnosed at 10 months. From the day of our diagnosis, Hope for HH has been our lifeline for support and information. We are so thankful to have found such…
As part of joining Hope For Hypothalamic Hamartomas team of volunteers I was asked to share my story of ‘Why’ I was driven to join the organization and help others in the Hope For HH Community. ‘This is My Why’ I was 35 weeks pregnant with a healthy baby boy when my husband and I…
As we continue through International Hypothalamic Hamartoma Awareness month we are sharing the ‘Why‘ of the Hope For HH board members. They were asked to share their reasons for being part of this organization and for generously volunteering their time and expertise to the HH Community. Each board member was asked the following questions: Why…
During our annual board 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 organization? Today we…
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…
My name is Cindy Rubash and I am a volunteer with Hope for HH. I was asked to explain why I have chosen to be a volunteer (besides the fact that I am retired and have way too much time on my hands). Well, I have a grandson with HH. Our family has a history…
I’m a full-time nurse, wife, and a mother of two children…Reece who’s 10 and Nora, who’s 7. Reece was diagnosed at age 5 after his seemingly innocent spells of laughter began to be followed by bouts of staring, confusion, and sleepiness. After a year of failed treatment with medication, he had a laser ablation at…
Hope for HH would like to introduce and send a warm welcome to the newest member of our team – Afsoon Movahed! Afsoon is joining us as an Intern and will be working on a wide variety of projects. One of those projects will be blogs. She will be interviewing some our families and individuals…
