Calvin's Crusade 5K Walk/Run for Sturge-Weber Syndrome Awareness
Join us for the first annual Calvin's Crusade 5K Walk/Run for Sturge-Weber Syndrome Awareness!
When: Saturday, May 28, 2022 (event will be held rain or shine!)
Event begins at 9:00 a.m.
You are highly encouraged to register in advance through the registration link above; however, you can also register on the day of the event, prior to the start time. Online registration will close on Thursday, May 26 at midnight.
Where: North Park Boathouse
10301 Pearce Mill Rd
Allison Park, PA 15101
Details:
All proceeds benefit Sturge-Weber syndrome research at Kennedy Krieger Institute.
Help raise awareness for Sturge-Weber syndrome and support our best buddy, Calvin Milo Torrance in his fight!
Follow Calvin’s Crusade on Facebook!
https://www.facebook.com/CalvinsCrusade
For questions or more information, please contact Nanette Harford at 724-316-4649.
What is Sturge-Weber Syndrome?
Sturge-Weber syndrome (SWS) is a very rare neurological condition present at birth. SWS causes blood vessels to grow too much, forming growths called angiomas. These angiomas can lead to a port-wine birthmark on the face. They can also grow in the brain and cause symptoms such as seizures, glaucoma, developmental delays and more.
Some estimate only one in 20,000-50,000 newborns have the condition. About three in 1,000 babies are born with a port-wine birthmark. Only about 6% of babies (around one in 20) with the birthmark also have neurological symptoms.
The cause of Sturge-Weber syndrome is a mutation in the GNAQ gene. This type of gene mutation occurs randomly in the developing embryo, affecting only certain tissues in the body. It is not hereditary.
SWS treatment varies depending on the individual's specific symptoms, but may include anti-seizure medications, brain surgery, laser skin therapies, physical therapy, regular eye exams, special education and learning support.
Calvin Milo Torrance
Diagnosed with SWS at 7 months old, Calvin has two of the three features: port-wine birthmark & leptomeningeal angioma.
The decrease in blood flow caused by leptomeningeal angiomas has caused stroke-like episodes in Calvin on numerous occasions. These episodes often involve temporary muscle weakness on one side of the body, vision abnormalities, seizures, and migraine headaches.
Calvin has spent countless hours and days in the hospital trying to control his seizures, but unfortunately, he has drug-resistant epilepsy.
Calvin works with a team of doctors, specialists and therapists each week who provide the tools and support needed to assist in Calvin's development. Calvin’s SWS doctor is Dr. Anne Comi of Kennedy Krieger Institute in Baltimore. She and her colleagues discovered the gene that causes SWS and she not only provides patient care but conducts groundbreaking research to better understand and treat SWS. All proceeds from the event will benefit her research efforts at Kennedy Krieger.
