Past Events:
Sturge-Weber Annual Virtual Family Conference
Conference Topic: Adults Living with Sturge-Weber Syndrome
Date: May 17, 2025
Time: 10 a.m. to 2 p.m.
Our annual Sturge-Weber Syndrome Virtual Family Conference took place on Saturday, May 17. The symposium’s presentations helped those living with Sturge-Weber syndrome and their family members learn more about—and manage—their condition.
The conference focused on managing the disorder in adults. We brought together individuals from around the United States to learn from one another and hear from some of the world’s top doctors and scientists specializing in this syndrome.
Presentations included:
10:00 - 10:05 a.m. Introduction and Welcome
Presented by Dr. Bradley L. Schlaggar, president and CEO of Kennedy Krieger Institute
10:05 - 10:35 a.m. Focusing on the Brain: Understanding Adults with SWS
Presented by Dr. Anne Comi, director of the Hunter Nelson Sturge-Weber Syndrome Center at Kennedy Krieger Institute, professor of Neurology and Pediatrics at the Johns Hopkins University School of Medicine
10:35 - 11:05 a.m. Why Adults with SWS See a Geneticist
Presented by Dr. Nara Lygia de Macena Sobreira, associate professor of genetic medicine, at the Johns Hopkins University School of Medicine
11:05 - 11:35 a.m. What Can Go Wrong Now? Glaucoma, Eye and Vision in Adults with SWS
Presented by Dr. Courtney Kraus, associate professor of ophthalmology, at the Wilmer Eye Institute of the Johns Hopkins University School of Medicine
11:35 a.m. - 12:05 p.m. What Matters to Me: Function and Quality of Life for Adults with SWS
Presented by T. Andrew Zabel, vice president of clinical research and quality improvement at Kennedy Krieger Institute
12:05 - 12:35 p.m. Rehabilitation Considerations and Resources for Older Teens and Adults with SWS
Presented by Dr. Stacy Suskauer, vice president of pediatric rehabilitation, co-director of the Center for Brain Injury Recovery and director of the Brain Injury Clinical Research Center at Kennedy Krieger Institute, professor of physical medicine & rehabilitation and pediatrics at the Johns Hopkins University School of Medicine
12:35 - 1:05 p.m. What Do Adult Patients and Their Families Need to Know about Hormones in SWS?
Presented by Dr. Anne Comi, director of the Hunter Nelson Sturge-Weber Syndrome Center at Kennedy Krieger Institute, professor of Neurology and Pediatrics at the Johns Hopkins University School of Medicine
1:05 - 1:30 p.m. Important Family and Patient Roles in Advocacy, Education and Impacting the Future of Adults with SWS
Presented by Ida Heck, president of Celebrate Hope Foundation
1:30 - 2:00 p.m. Looking Back and Moving Forward; What is Needed and Where Do We Go From Here?
Presented by Dr. Anne Comi
2024 Sturge-Weber Syndrome Virtual Family Symposium
Our annual Sturge-Weber Syndrome Virtual Family Symposium on took place on Saturday, May 25. The symposium’s presentations helped those living with Sturge-Weber syndrome and their family members learn more about—and manage—their condition. We brought together patients and families from around the United States to learn from one another and heard from some of the world’s top doctors and scientists specializing in this syndrome.
Presentations included:
Introduction and Welcome
Presented by Dr. Bradley L. Schlaggar, president and CEO of Kennedy Krieger Institute
Presymptomatic Treatment for Infants With SWS: History, Study Results and Next Steps
Presented by Dr. Anne Comi, director of the Hunter Nelson Sturge-Weber Syndrome Center at Kennedy Krieger Institute
EEG and SWS: How Is EEG Used and What Are Its Clinical Applications?
Presented by Dr. Siddharth Gupta of Kennedy Krieger Institute
Neurological Complications of SWS and Cognitive Impacts
Presented by Dr. T. Andrew Zabel, vice president of clinical research and quality improvement at Kennedy Krieger Institute
Neurological Complications of SWS and Motor Impacts
Presented by Dr. Stacy Suskauer, vice president of pediatric rehabilitation, co-director of the Center for Brain Injury Recovery and director of the Brain Injury Clinical Research Center at Kennedy Krieger Institute
Conclusion, Resources and Next Steps
Presented by Dr. Comi
Hunter Nelson Sturge-Weber Center Annual Virtual Sturge-Weber Family Webinar
What is stroke and stroke-like episodes in Sturge-Weber syndrome and what can we do about them?
• Saturday, October 14, 10–2 p.m.
• Hosted by Dr. Anne Comi and by Mrs. Ida Heck
• Supported and promoted by the Celebrate Hope Foundation and by the Vascular Birthmarks Foundation
Annual Virtual Sturge-Weber Family Webinar - Kennedy Krieger Institute
SWS Family Information Meeting - 9/17/2022
We hosted a SWS Family Information Meeting on Saturday, September 17, 2022. This virtual meeting included recently published research studies.
Below is the agenda for the virtual SWS Family meeting.
- 10-10:10 a.m.: Welcome participants and speakers, review schedule for morning session, purpose of webinar, use of Q&A, etc.
- 10:10-10:45 a.m.: Updates in SWS diagnosis and treatment: Anne Comi and Q&A
- 10:45-11:15 a.m.: Identification and Diagnosis of Seizures and Seizure types: Eric Kossoff and Q&A
- 11:15 -11:45 a.m.: Surgery for Epilepsy in SWS: Ahmad Marashly and Q&A questions
- 11:45-11:55 a.m.: BREAK
- 11:55-12:00 p.m.: Welcome back, review of afternoon schedule
- 12:00-12:30 p.m.: Use of EEG and qEEG to diagnose Sturge-Weber syndrome brain involvement and for response in treatment trials: Josh Ewen and Q&A
- 12:30-1:00 p.m.: Glaucoma in Sturge-Weber syndrome: Diagnosis and Treatment: Courtney Krause and Q&A
- 1:00-1:30 p.m.: Headaches in SWS: Anne Comi and Q&A
- 1:30-1:50 p.m.: How you can help; fundraising for SWS advocacy, education and research; Ida Heck (Celebrate Hope Foundation) and Q&A
- 1:50-2 p.m.: Closing and how families can follow up
- 2 p.m.: Meeting completed.
This meeting was also supported by the Vascular Birthmarks Foundation.
Calvin’s Crusade 5K Walk/Run for Sturge-Weber Syndrome Awareness
May 28, 2022 at 9 a.m.
North Park Boathouse
10301 Pearce Mill Rd
Allison Park, PA 15101
Calvin and his crew walked and ran to raise funds for Sturge-Weber syndrome research at Kennedy Krieger Institute!
Grand Canyon Rim-to-Rim Hike Benefitted Sturge-Weber research at Kennedy Krieger Institute
On June 15th, 2020, Al and his brother Joe DeCesaris hiked 23.9 miles from the Grand Canyon’s north rim to south rim in honor of their niece Jenna. They took on this challenging adventure to raise funds for the research of Sturge-Weber syndrome, the rare and devastating neurological disorder that affects Jenna and thousands of others. Grand Canyon Rim-to-Rim Hike is an Adventure for Charity hosted by Difference Makers Global Community. To make a difference for those in need, participants use the adventure to raise funds and awareness for a charitable organization dear to them