AURORA, Colo.--(BUSINESS WIRE)--The Sturge-Weber Foundation (SWF) today announced that the SWF International Family Conference will take place from July 11-13, 2024, in Philadelphia, PA, and registration is open. Conference attendees will learn about the latest Sturge-Weber syndrome (SWS) news, and the SWF encourages individuals living with SWS and their families, advocates, and providers to attend. For more information and registration, visit the SWF website.
Leading SWS clinicians and researchers will present new preclinical and clinical data, information, and updates about SWS. The SWF will host breakout sessions and discussion groups for all participants. There will also be on-site clinic appointments with Clinical Care Network (CCN) specialists and activities for kids and child-care services, including KidsCamp. In addition, Jordan St. Cyr, renowned Canadian Christian musician and father of a daughter with SWS, will perform at the conference. Jordan was recently featured in People Magazine where he discussed his daughter’s SWS diagnosis and his family's journey with SWS.
“We’re thrilled to host the Sturge-Weber syndrome community and work together to support patients and their families,” said Karen L. Ball, President and CEO of the Sturge-Weber Foundation. “Collaboration is essential to drive research that will hopefully lead to a treatment in the future. We thank the community for their support and raising the visibility of this devastating disease.”
SWS is a congenital, non-familial, rare disorder caused by the GNAQ gene mutation for which there are no approved treatment options. SWS is characterized by a congenital facial birthmark and neurological abnormalities. Other symptoms associated with SWS can include eye, endocrine, and organ irregularities, as well as developmental disabilities. Each case of SWS is unique and exhibits the characterizing findings to varying degrees.
In May, the community recognized SWS Awareness Month. Throughout the month, The SWF hosted the "Ask a SWS Warrior" Q&A Series throughout May. Topics included: Dermatology, Laser Treatments, Neurology, Hemi Surgery, Migraines, Living with Seizures, and Ophthalmology, Glaucoma, Blindness, among others.
Symptom management strategies for individuals with SWS include anticonvulsants for seizure control, symptomatic and prophylactic therapy for headaches, glaucoma treatment to reduce intraocular pressure (IOP), and laser therapy for the port-wine birthmark.
Although SWS can be managed and the cause has been found, critical studies for underlying pathways are needed before therapies can be developed. Research for SWS is important to better understand SWS, how to treat the disease, and ultimately, finding a potential cure. A majority of the fundraising that the SWF receives supports clinical research. You can learn more about participating in research by visiting the SWF website.
Recently, one of the SWF’s board members, Rob Zarko, who is also the President of Ship Bottom Brewery, and his team at the brewery won the 2024 World Beer Cup - Gold Award. In addition, Rob is an avid runner and participated in Ship Bottom Brewery’s Running with the Sharks 5K on June 9. Rob’s next race will be the Ecto Ghouler 5K on October 5. The SWF is the charity partner for Ship Bottom Brewery’s 5K events. You can get involved and support the SWS community by visiting the SWF website.
About Sturge-Weber Syndrome (SWS)
Sturge-Weber syndrome (SWS) is a congenital, non-familial, rare disorder caused by the GNAQ gene mutation. It is characterized by a congenital facial birthmark and neurological abnormalities. Other symptoms associated with SWS can include eye, endocrine, and organ irregularities, as well as developmental disabilities. Each case of SWS is unique and exhibits the characterizing findings to varying degrees. SWS has no clear genetic pattern, and two affected individuals almost never arise in the same family. The syndrome presents in all races and with equal frequency in both sexes. Port wine birthmarks occur in 3 of 1000 newborns.1
About the Sturge-Weber Foundation (SWF)
The Sturge-Weber Foundation (SWF) is a 501 (c) (3) non-profit organization with an ever-increasing worldwide membership and is funded by corporate and private donations, grants, and fundraising activities. The SWF was founded by Kirk and Karen Ball. They began searching for answers after their daughter, Kaelin, was diagnosed with Sturge-Weber syndrome (SWS) at birth. The SWF was incorporated in the USA in 1987 as an International 501(c)(3) non-profit organization for patients, parents, professionals, and others concerned with SWS. In 1992, the mission was expanded to also support and serve individuals with capillary vascular birthmarks, Klippel-Trenaunay (KT), and Port-Wine Birthmarks (PWB). The SWF’s global mission is to improve the quality of life and care for people with SWS and associated PWB conditions through tenacious collaboration with clinical partners and pioneers, education, advocacy, research, and friendly support. For more information, visit the sturge-weber.org.
Reference
1. Understanding Sturge-Weber syndrome. The Sturge-Weber Foundation; 2024. Available at: https://sturge-weber.org/new-to-swf/understanding-sturge-weber.html. Accessed June 17, 2024.
