Upcoming 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.
Join us for our annual Sturge-Weber Syndrome Virtual Family Conference on Saturday, May 17. The symposium’s presentations will help those living with Sturge-Weber syndrome and their family members learn more about—and manage—their condition. This year's conference will focus on managing the disorder in adults. We will bring 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.
Tentative Symposium Agenda
Introduction and Welcome
Presented by Dr. Bradley L. Schlaggar, president and CEO of Kennedy Krieger Institute
Neurological Issues and 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
Ophthalmologic Issues in Adults with SWS
Presented by Dr. Courtney Kraus, associate professor of Ophthalmology, Wilmer Eye Institute, Johns Hopkins University School of Medicine
Genetic Issues and Adults with SWS
Presented by Dr. Nara Lygia de Macena Sobreira, associate professor of Genetic Medicine, Johns Hopkins University School of Medicine Medical
Rehabilitation 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
Function and Quality of Life in adults with SWS
Presented by T. Andrew Zabel, vice president of clinical research and quality improvement at Kennedy Krieger Institute
Neuro-Endocrine issues and Adults with SWS
Presented by Dr. Anne Comi Adults with SWS Supporting SWS Care and Research Presented by Ida heck, President of Celebrate Hope Foundation Conclusion, Resources and Next Steps Presented by Dr. Anne Comi
There is no cost to attend this conference. Click here to register. Once registered, you will receive a link to access the conference.
Past Events:
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
Dear SWS Center Families and Friends,
Once again we are hosting a SWS Family Information Meeting On Saturday, September 17, 2022. This will be a virtual meeting and will include 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 is also supported by the Vascular Birthmarks Foundation.
For those that register, you will receive a meeting link by Tuesday, September 14. If you have not received the link by that time, please reach out to the emails above. All requests for links need to be sent by September 14, 2022 at midnight.
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
Join Calvin and his crew as they walk and run to raise funds for Sturge-Weber syndrome research at Kennedy Krieger Institute!
Grand Canyon Rim-to-Rim Hike to benefit Sturge-Weber research at Kennedy Krieger Institute
Al DeCesaris is at it again!
On June 15th, Al and his brother Joe DeCesaris will hike 23.9 miles from the Grand Canyon's north rim to south rim in honor of their niece Jenna. They're taking 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 will use the adventure to raise funds and awareness for a charitable organization dear to them. Learn more.