As we near the close of 2021 we want to reflect on the challenges and triumphs of another year trying to find our new normal in the midst of an ongoing pandemic. As an organization that is internationally based, we were well prepared to work as a remote team and support our Hope for HH community without disrupting our initiatives for 2021. As a matter of fact, we were able to support additional HH-specific research opportunities that presented themselves during the year.
With the resilience of our team and the unwavering support of our community, we've been able to stay true to our mission and accomplished some extraordinary things this past year!
Information and Operation Highlights
-
Launched a new website with the primary objective of ensuring we provide current information and resources for all stages of the HH patient journey from pre-diagnosis, diagnosis, treatment, and living as an adult after treatment. In order to support our international community, the website is also available in French, German, and Spanish.
-
Hope for HH was awarded a $50,000 grant from Chan Zuckerberg Initiative to be utilized for general operating support and core program support.
Research Highlights
- Medical Advisory Board special task force drafted clinical recommendations for the diagnosis, treatment, and long-term care of those with hypothalamic hamartomas. These recommendations will cover the spectrum of comorbidities associated with HH. In the coming year, we hope to disperse this information to other providers to help expedite a correct diagnosis much earlier in the patient journey!
- Hope for HH awarded a $50,000 grant. This grant is funding a collaboration between the University of Melbourne and Baylor College of Medicine with the focus on genomic profiling of HH-derived samples obtained during MRI-guided Laser Interstitial Thermal Therapy. This critical research could lead to a better understanding of the genetic foundations for HH.
- $9,000 in multiple grants awarded by Hope for HH to fund the shipment of HH tissue from Great Ormond Street Hospital and Alberta Children’s Hospital to the University of Melbourne to be used for genomic profiling. This is critical for research as collaboration from several centers is the only way we will be able to drive results with limited amounts of HH tissue.
-
The review publication 'Hypothalamic Hamartomas: Evolving Understanding and Management' from the 4th International Symposium on Hypothalamic Hamartoma was published in the November 2021 issue of the Journal of American Academy of Neurology. Thank you to our Medical Advisory Board for their dedication and diligence in getting this work published. Peer-reviewed publications are the way professionals from all specialties learn about advancements in treatments and research in a rare disease.
Support Highlights
- Launched the International Meet & Greets to provide our community members to connect through live, interactive video conferencing. We held five virtual events which provided an opportunity for many to meet and form lasting friendships with others that truly understand!
- Hosted the 2021 Virtual Patient Conference. We had nine speakers and multiple breakout sessions covering: treatments, mental health, caregiver concerns, impact on the family, service dogs, executive function, and memory. We would love to hear about your experience and what you liked most or what other topics you might like to hear about in the future!
- Provided Surgical Comfort bags to adults and children going for treatment through our partnerships with Phoenix Children's Hosptial, Texas Children's Hospital, and Seattle Children's Hospital.
-
Launched a private Hope for HH Community Group on Facebook. If you haven't already joined, you can do so HERE! We would love to connect!
We want to express our sincere gratitude for the Hope for HH patients, caregivers, professionals, volunteers, and donors who continue to support us in this fight. We have proven once again this small, but mighty community is RESILIENT, FOCUSED, and full of HOPE for the future.
As you plan your year-end giving we hope you will consider a donation to HOPE. Your donations directly impact HH patients and their families by allowing us to continue the following initiatives and programs:
- Provide information and education to patients, families, and healthcare providers.
- Host future Meet & Greet events and Patient Conferences
- Provide patient surgical bags at three HH treatment facilities across the United States
- Fund new HH focused research and collaborations across international institutions
- Expand our international awareness of proper diagnosis and treatment options for those with hypothalamic hamartomas.
- Co-host the 5th International HH Professional Symposium in Calgary, Canada (September 2022)
Wishing you a Happy New Year,
Erica, Lisa, Emma, Kimberly, and Kathy
Hope for HH Board of Directors
