Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas - a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities for future HH research studies and collaborations to improve diagnosis, treatment and care of both the seizures as well as the other endocrinological and neuropsychological symptoms. This is the 4th Symposium on HH and the third time Hope for HH is co-hosting it. Prior Symposiums took place in Montreal, Canada (2001); Marseille, France (2013); London, United Kingdom (2016) and now Washington DC, USA (2019).
Having attended the Symposium in Marseille (hosted by Dr. Regis) with fellow Hope for HH founders Lisa Soeby and Emma Nott, we still remember and reminisce about the first time Drs. Rekate and Regis met in person. Here were two HH internationally respected experts - each who had treated large numbers of patients and published papers on this disease. We had taken for granted that of course these doctors knew each other and had previously met. Alas, while they knew “of” each other, they had not met face-to-face. For the next few days they had in-depth conversations about HH, treatment and care. Dr. Curry was at the same meeting and laser was very much considered experimental back in 2013. We recall Dr. Curry reflecting with a sense of awe as a younger upcoming neurosurgeon about the opportunity to interact with, learn from, and even challenge his more senior colleagues. New relationships, trust, camaraderie, and collaborations were all seeded at that meeting in ways it would have been difficult to establish by phone or otherwise. To this day, it is a huge point of pride that Hope for HH played a small role in bringing the HH clinicians and researchers together.
With HH patients and caregivers as well as the doctors and nurses that care for them internationally dispersed, we recognized it was critical to create opportunities for these great minds and individuals to come together to discuss and debate treatment and care, to know one another, to share a meal and a laugh, and to build partnerships and long-lasting friendships. Following the Symposium in Marseille, the clinicians and researchers literally implored Hope for HH to keep organizing these meetings. So, we did next in London hosted by Dr. Cross. Not only did two significant research projects follow the 3rd Symposium, but we attracted new out of the box thinkers in other key areas to this cause.
As we get ready to welcome 50 HH thought leaders to Washington, DC in September, we want the HH patient and caregiver community to understand not only the significance of these past meetings but how YOU can make a very real impact on the one upcoming. This spring we will invite you to participate in a co-morbidity survey so you can directly tell the clinicians and researchers about the very real side effects and symptoms beyond the seizures you or your HH patient experience. Your insights will drive new discussions and hopefully collaborations and improved treatments that will impact all of our families.
You can see the Symposium agenda here. You will see familiar faces in Dr. Gaillard who is Chairing the DC meeting, along with a steering committee including Drs. Cross, Arzimanoglou, Curry and Kerrigan. These dedicated neurologists and neurosurgeons volunteer their time to Hope for HH to plan and attend these meetings - above and beyond very busy clinical practices. Moreover, we have 100% participation by our MAB in the Symposium either in the planning or in person. We are truly grateful.
In this blog series, we will introduce you to several internationally recognized clinicians and researchers who are thought leaders both inside and outside of HH and who will serve as facilitators, presenters and discussants at the Symposium. Highlights of the Symposium will also be available to the HH patient and professional community following the meeting.
We very much welcome your questions and inputs as we prep for this important meeting. We are excited and hope you are too!