Upcoming Events:

Sturge-Weber Syndrome Virtual Family Symposium

A young boy with Sturge-Weber, a rare disease, sits at a table and smiles.

Join us for our annual Sturge-Weber Syndrome Virtual Family Symposium on Saturday, May 25. The symposium’s presentations will help those living with Sturge-Weber syndrome and their family members learn more about—and manage—their condition. We will bring together patients and families 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.

We have moved this conference from September to May to coincide with the Sturge-Weber Foundation Month of Awareness and the Vascular Birthmarks Foundation’s International Month of Awareness for Vascular Birthmarks.

Register Today

Tentative Symposium Agenda

(Each presentation will be followed by a Q-and-A session.)

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

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: 

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.

If you are interested, please email Dr. Comi at Comi@KennedyKrieger.org and CC Valerycb@KennedyKrieger.org and Yeom@KennedyKrieger.org. 

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

Calvin's Crusade logo

 

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!

Al-Joe-DeCesaris-400x267.jpg

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.

Golf Tournament raises $30k+ for Sturge-Weber Syndrome research

On October 1st, more than 140 golfers participated in Tropical Realty’s 12th Annual Charity Golf Tournament in Melbourne, Fla. Proceeds from the tournament benefit Sturge-Weber syndrome (SWS) research at Kennedy Krieger Institute. The weather was beautiful and golfers enjoyed the famous helicopter ball drop, fabulous door prizes, delicious food and great company. We are grateful to Mitch Ribak and his family and colleagues at Tropical Realty for all their efforts in raising funds for SWS. This year’s tournament raised more than $30,000 bringing their overall donation total to over $200,000. For more event photos, visit tropicalrealtygolf.com.