Today’s story in Give It All You’ve Got comes from Carrie Fulcher. Hollie’s quote — “You get 3 choices in life: give up, give in, or give it all you’ve got” — inspired this series. It resonates across our entire community, but it speaks with particular force to adults living with HH Syndrome, many of…
Today marks the start of a new series: Give It All You’ve Got. All September, we’ll be sharing the voices of adults living with HH Syndrome, parents, caregivers, family members, and the clinicians who show up for this community — each answering what it means to give everything they’ve got. The series is inspired by…
We are so happy to announce Natalie Heger has joined Hope for HH as a volunteer. Natalie’s focus will include our Information, Support and Awareness programs. A Little About Natalie: Natalie Heger is an educator, military spouse, and mother to Maren, who lives with a hypothalamic hamartoma (HH). Natalie’s professional background includes work in both the…
My pregnancy and Arrabella’s early childhood up until October 2022 were completely normal. She was a bright, curious little girl who always wanted to know the “why” behind everything. She was caring, especially when her brother was born, and our home was constantly filled with music – something that hasn’t changed. Looking back, she had…
Trigger Warning: This article discusses topics related to eating disorders and suicide. Reader discretion is advised. My name is Tatum, and I survived an undiagnosed hypothalamic hamartoma for thirty-one years. I was born a happy and healthy 8-pound 3-ounce baby. From the time I was an infant, I was picky about a lot of things.…
Hope for HH is co-sponsoring the 6th International Symposium on Hypothalamic Hamartomas – a professional symposium for HH investigators, clinicians, and researchers in Barcelona, Spain, September 4-5. Over the years, we have come to appreciate the incredible power of these meetings, which allows us to facilitate the bringing together of an international group of experts…
My name is Sally. I’m now 68 years old, and a reference librarian at a law school where I teach soon-to-be lawyers Advanced Legal Research. Some facts about me include having three university degrees, a cute little nub on my left hand where my 6th finger was, a scar on my right foot where my…
We are so happy to announce Malinda Teague has joined Hope for HH as a volunteer. Malinda’s focus will include our Research and Information Committees. A Little About Malinda: Malinda Teague is an Assistant Professor and Director of the Pediatric Primary Care Nurse Practitioner Program at Duke University School of Nursing. Prior to joining…
On the 18th of September 2023, our beautiful little girl Remy was born. A perfect 3.5kg bundle of love and adored by her big brother from day 1. My midwife checked her APGAR (a test given to newborns soon after birth) and delightfully noted it was a 10. Over the next 4 weeks she was…
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…
In September 2022, we welcomed to the world, our beautiful little girl, Sofia – we were excited but understandably nervous, as my pregnancy hadn’t been smooth sailing. Throughout my pregnancy I had repeat episodes where Sofia would stop moving for long periods of time, causing us to visit the hospital on multiple occasions – each…
Kaelee’s HH Journey Kaelee was born in 2013 as the first of identical twins. The birth was uncomplicated, and she and her sister reached all of their milestones appropriately and she was a happy, bubbly little girl. When she entered school, Kaelee was by all standards above average. She and her sister had a large…
