Upcoming Events:
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
Past Events:
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! For more information or to register, click here.
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.