Inspired and Hopeful.
At the conclusion of the five days, the Hope for HH Board of Directors felt a new sense of energy, inspiration and most of all HOPE for what the future holds for research, treatment and eventual cure of epilepsy within our hypothalamic hamartoma community and those of other rare epilepsy disorders.
The annual event (aesnet.org), held in Houston this year, brought together thousands of epilepsy professionals, patient advocacy organizations and researchers from around the world. All focusing their efforts on three main areas:
- Sharing of latest information regarding epilepsy and it’s treatments
- Identifying major roadblocks seen within the professional community as well as within the patient community
- Exploring how the professional community can better serve those with epilepsy in the future
Hope For HH Board at AES 2016 (from left: Ilene Miller, Lisa Soeby, Emma Nott, Erica Webster, Kathy Jensen, Wendi Tipps)
Each day of the event offered educational opportunities in a variety of formats: large group symposiums, lectures and small interest group sessions. In addition to these formal presentations and discussion groups, the convention center provided a large exhibit area where patient advocacy groups, like Hope For Hypothalamic Hamartomas, could setup an information booth alongside hospitals, pharmaceutical companies, and technology vendors.
To better understand and facilitate discussions within the professional arena as well as better educate our own community, the Board focused on attending presentations that might prove relevant to improving HH treatment and expanding research opportunities going forward. The sessions we focused on were:
- Epilepsy Specialist Symposium | Choosing from the Feast of Epilepsy Surgery Procedures: How Do We Decide the Best Course for Each Patient
- Source: America Epilepsy Society – Annual Fundamentals Symposium
- Annual Fundamentals Symposium | The New Definition and Classification of Epilepsy
- Source: America Epilepsy Society – Epilepsy Specialist Symposium
- 14th Judith Hoyer Lecture in Epilepsy | The SUDEP Movement From Inception to the Goal
- Special Interest Group | Dietary Therapies for Epilepsy (Ketogenic Diet)
- Special Interest Group | Genetics
- AES Informal Learning Center – Hope For Hypothalamic Hamartomas | Research Update – Highlights from 3rd Annual International Symposium (Dr. Helen Cross)
In addition, our board of directors had independent sessions with the following groups and will provide more information on each in upcoming blog posts. So stay tuned!
- Rare Epilepsy Network (REN)
- Epilepsy Leadership Council (ELC)
- AES Leadership Meeting
- Hope For Hypothalamic Medical Advisory Board
If you are interested in knowing the full list of epilepsy topics discussed at the 70th AES Annual Meeting, check out the Program Book at www.aesnet.org.
