Hope For Hypothalamic Hamartomas - September 2020
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TODAY is International HH Awareness Day |
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Today, September 15th, is the first ever International Hypothalamic Hamartoma (HH) Awareness Day! We are excited to mark 2020 with this important milestone for those we serve in the HH community.
Help us spread awareness of this rare disease! Our goal is to improve the quality of life of people living with hypothalamic hamartomas (HH). Although generally characterized by rare gelastic (laughing) seizures, those living with HH understand it is more than an epilepsy syndrome. The comorbidities associated with HH include endocrine dysfunction, psychiatric conditions, cognitive impairment, and sleep disturbances. Working together with the HH community we can positiviely impact those living with this complex and rare syndrome by raising awareness, educating our communities and pushing for more research.
We ask that you, our HH community, embrace this international awareness initiative TODAY and throughout the month of September. Working together we'll ensure those with HH continue to have a voice!
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Focused Ultrasound Clinical Trial |
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Who are the ideal candidates for this trial?
- Kids 12-16 years of age
- With or without prior surgery
- Small or pedunculated HH - Delalande and Fohlen Classification Type I, IIB, or III
- Able to travel to Miami, Florida for the trial - including international patients
How can I learn more about FUS?
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Download FUS Clinical Trial Brochure
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Learn about Madeline’s journey as an HH patient with hypothalamic hyperphagia here
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Learn about the clinical trial here
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Learn about Nicklaus Children’s Hospital FUS team here
Who can I contact to assess my candidacy?
- Contact research Principle Investigator Dr. John Ragheb at: john.ragheb2@nicklaushealth.org
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*This content is being provided for informational purposes only, and you assume full responsibility and risk for the appropriate use of information contained herein. Our full Medical Disclaimer can be found here.
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When Andrew had his first generalized seizure at age 13, he didn’t know that the involuntary laughing spells he had been having his whole life were also seizures. He met Dr. Juan Pablo (JP) Appendino, pediatric neurologist at Alberta Children’s Hospital and the cause of both was found to be a small hypothalamic hamartoma (HH). As is typical of many patients with HH he continued to have multiple daily gelastic seizures (laughing spells) despite maximal medical therapy.
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Last month, on the eve of his 18th birthday, Andrew underwent robotic assisted Laser Interstitial Thermal Therapy (LITT) for his HH in the Siemens Intraoperative MRI Suite at the Foothills Medical Centre in Calgary. His successful treatment was the third such LITT for HH to be performed by Dr. Walter Hader, epilepsy neurosurgeon in Calgary since the establishment of the program in early 2020. Although only a short time has elapsed since surgery, Andrew has been free of the seizures for the first time he can recall in his whole life.
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The Calgary Epilepsy Program is a comprehensive multidisciplinary program of pediatric and adult epilepsy specialists, directed by Dr. Samuel Wiebe and Dr. Julia Jacobs-Levan, pediatric Neurologist and head of epilepsy at the Alberta’s Children’s Hospital. Dr Julia Jacobs is a member of the Medical Advisory Board of Hope for Hypothalamic Hamartoma and gained substantial experience in treating affected children in her previous work as Director of Pediatric Epilepsy in Freiburg, Germany. The LITT program was recently established as a result of a philanthropic joint venture between the Alberta Children’s Hospital Foundation and Calgary Health Trust in support of the Epilepsy surgery program. Patients with HH across Western Canada who have medically intractable seizures can now benefit from the generous help of the Calgary community, and take advantage of the world class care available in the Calgary Epilepsy Program and Epilepsy Surgery program. Notably, Dr Jacobs-Levan and the Calgary Epilepsy Program, is set to host the 5th International Hypothalamic Hamartoma Professional Symposium scheduled for 2022.
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*This content is being provided for informational purposes only, and you assume full responsibility and risk for the appropriate use of information contained herein. Our full Medical Disclaimer can be found here.
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HH In The News - Rare Revolution Magazine |
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Hope For HH patient stories to be featured forthcoming edition which will be RARE Revolution Magazine, Autumn 2020, Issue 017 – RARE Epilepsy. To recieve your free digital copy on October 12 sign-up on their website here.
We'd also like to thank Rare Revolution for partnering with us today, International HH Awareness day by featuring us on their social media outlets for #tuesdaytakeover.
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Don't Forget to Give Your Change for CHANGE |
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Give us your change so we can make change!!
Help us hit that $10k goal by the end of September!!! Please share this International HH Awareness Month fundraiser (https://bit.ly/2QWCSDl) with your circle of friends and family. Make sure to let people know Hope For HH is the only nonprofit organization focused on helping those with this rare disease through direct patient support, education, awareness, and research. As a 100% volunteer run organization all donations directly towards initiative and programs aligned with our Mission to help all individuals living with HH.
Donate through our website here
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Want to Give Back to the HH Community? |
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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.
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