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…
The Heart of a Volunteer “The heart of a volunteer is never measured in size, but by the depth of the commitment to make a difference in the lives of others.” – DeAnn Hollis Greetings HH community! I wanted to take a moment and provide you some of my background. I was born, raised in…
Today is National Nonprofit Day. What kind of person starts a nonprofit anyway? I used to think it had to be someone that was a probably a celebrity, really smart, well connected, had access to a great deal of money and probably had lots of business sense. I had heard of the Bill and Melinda…
Heart of a Volunteer “The heart of a volunteer is never measured in size, but by the depth of the commitment to make a difference in the lives of others.” – DeAnn Hollis My Daughter Elleanor was diagnosed with HH (hypothalamic hamartoma) when she was 2 (2014) after previously being diagnosed with reflux. She underwent…
Heart of a Volunteer “The heart of a volunteer is never measured in size, but by the depth of the commitment to make a difference in the lives of others.” – DeAnn Hollis My goal in volunteering for Hope for HH is very personal. My son Christopher was officially diagnosed with HH (hypothalamic hamartoma) at…
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