Hope For Hypothalamic Hamartomas - January 2021
Hope For HH Funds HH Genetic Grant
Supporting and funding research in hypothalamic hamartomas is a key mission of our organization. We have provided funding for several research projects over the past decade, including a rat model and resting-state functional MRI, and we will continue this type of funding as we push for finding better treatments and eventually a cure. Our latest grant has been awarded to Dr Michael Hildebrand. Dr Hildebrand is molecular geneticist at the Epilepsy Research Centre at the University of Melbourne and joined the Hope For HH Medical Advisory Board (MAB) in 2019 with a focus on the genetics of hypothalamic hamartomas.
Due to the recent advancement of non-invasive surgical treatments, specifically laser ablation, the availability of resected tissue is scarce leading to limitations in genetic research. At our 2019 International Symposium, Dr. Hildebrand proposed looking into harvesting HH tissue from the tip of the laser ablation probe and determining if there was a sufficient volume of cells for viable genetic testing. In early 2020, Dr. Hildebrand partnered with Dr. Karl Klein the University of Calgary Hospital to validate this approach. By the end of the year, they were able to validate this method and formed a partnership between the two centers. This then led to reaching out to other HH treatment facilities to determine their interest in partnering with Dr. Hildebrand. We are excited to announce Hope For HH has awarded Dr. Hildebrand two separate grants in 2021. The grants have been awarded to fund all shipping costs associated with HH tissue being sent from Phoenix Children's Hospital (PCH) and Great Ormond Street Hospital (GOSH) to Melbourne, Australia.
These research grants are only possible through the generous donations we receive. Please consider making a donation today to ensure Hope For HH can continue to drive and fund HH specific research.
2021 Hope For HH Patient Conference
We had nearly 40 people from the Hope For HH community participate in our survey. The information you shared will drive the topics, speakers, and break-out sessions of this multi-day event.

The focus of the 2021 Virtual Patient Conference will be focusing on both adult and pediatric patients and their unique concerns.

Stay tuned for more information in the upcoming months.
2021 Virtual Meet & Greets
We are so happy with the number of people who registered for Hope For HH's Virtual Meet & Greet sessions. Our team is busy behind the scenes finalizing the plans. We are planning to have these virtual events kick-off in March 2021.

For those who signed up to participate, you'll be receiving an email in mid-February with additional information regarding the day and time.

The purpose of the Virtual Meet & Greet is to provide a casual, friendly opportunity for our Hope For HH Community to connect and catch-up! We can't wait to connect with you during these sessions.
Welcome Michelle Swartz
Please help us welcome Michelle to the Hope for HH team of volunteers. Michelle shares her 'Why' for joining our team and our mission to help those in our community on our blog.

Want to make a difference in the lives of those with hypothalamic hamartomas? Consider joining 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 Form to gather a bit more info about you and your interests.
Hope For Hypothalamic Hamartomas | www.hopeforhh.org | info@hopeforhh.org