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 Molly was 6 months old she was diagnosed with a hypothalamic hamartoma (HH) after numerous doctors visits and tests. We were told it was just “colic” but we trusted our intuition and kept pushing. Our story is like many others where we were considered pushy parents because we kept asking the hard questions. Through an older HH group known as H.H.U.G.S. (Hypothalamic Hamartoma Uncontrolled Gelastic Seizures) we were connected to Dr. Rekate and the team at Barrows in Pheonix, AZ. When we went to Barrows, we met the Soeby family, which was an amazing gift to know another family who understood HH. Molly had resection surgery in fall 2003 and thankfully has remained seizure free since being rolled into the operating room. She has overcome many of the side effects associated with HH and is currently thriving as a recent college graduate!
While we were fighting everyday to get her the care she needed and attempting to maintain a relatively “normal” homelife it was all we could do to take things one day at a time. Now, we are very grateful to be in a position to offer support, information, and a listening ear to other families as they navigate this crazy path. My husband Bill and I live in the upstate of South Carolina and are empty-nesting parents to Emily and Molly.
I have been a college professor for over 20 years and our journey with HH has helped me to better understand learning which has made me a better teacher. I am very grateful for the ways HH has helped me grow. I am looking forward to serving other families through volunteering and offering my experience in research and grant writing.
Want to make a difference? Join our Team.
If you are interested in becoming a volunteer for Hope for HH, to get the process started we invite you to complete the following Volunteer Inquiry Survey to gather a bit more info about you and your interests.
