American Academy of Neurology 2025

The Glut1 Deficiency Foundation had an exhibit booth in the Association Neighborhood at the 77th Annual Meeting of the American Academy of Neurology in San Diego April 5-9th. The meeting drew over 14,000 people interested in advancing the field of neurology and improving patient care.

Executive Director Glenna Steele attended and welcomed the opportunity to meet and learn from other patient advocacy organizations, hear from clinicians who already have Glut1 Deficiency patients in their care, and talk with others who were unfamiliar with the disease so they can hopefully help find the many we know who are still waiting on a diagnosis.

Several researchers were also in attendance and stopped by to learn more and share insights, especially in movement disorders associated with Glut1 Deficiency. We had several movement disorder patient advocacy groups near us in the Association Neighborhood (Myasthenia Gravis, Essential Tremor, PSP, Parkinson Disease, Lambert Eaton Syndrome, Tourette Syndrome, and ALS), so perhaps this helped with attendees deciding to walk down our row in the huge exhibit hall, but there seemed to be overall more interest in movement issues at this meeting than in the past when the G1DF has attended.

A number of child neurologists visited, but there was also an increasing number of adult neurologists who were aware of the disease, a few had patients already in their care, and more who were interested in learning than in the past. This was encouraging to experience, and we hope this is a trend that continues to grow. We have adult neurologists on our Medical and Scientific Advisory Board who are helping in these efforts (Dr. Mackenzie Cervenka and Dr. Elizabeth Felton along with dietitian Kelly Faltersack).

Residents, Fellows, and even some medical school students were also very interested to learn more, and many mentioned they had learned about Glut1 Deficiency during residency, so those are also encouraging things to hear in terms of new generations of physicians who will be more aware and hopefully can help diagnose patents earlier.

There was a lot of interest from the clinicians to hear about the upcoming clinical trials and the support programs we have for the patient community, and they seemed especially grateful for the Keto Care Project to help provide diet support where resources are limited or a keto center does not exist.

Dr. Karthik Rajasekaran, another member of our Medical and Scientific Advisory Board who used to work in Dr. Juan Pascual’s lab but now is Associate Medical Director for Jazz Pharmaceuticals, stopped by to catch up, offer some guidance in some key areas, and even jumped in to work the booth and help answer questions about Glut1 Deficiency.

An added bonus was the chance to visit the lab of Dr. Hudson Freeze at Sanford Burnham Prebys Medical Discovery Institute in La Jolla, California. Some recent discoveries in the lab from Dr. Freeze and lab manager Bobby Ng have helped lead to the fucose clinical trials we expect to start a little later this year.

We are sincerely grateful for this opportunity and to the G1DF supporters who help make these important parts of our mission possible.