Honorable Rodney Frelinghuysen Selected to Chair the House Appropriations Committee


On behalf of the Sturge-Weber Foundation, we would like to congratulate the Honorable Rodney Frelinghuysen
(NJ-11th) on being selected IMG 8632.JPGby his Congressional peers to chair the House Appropriations Committee. Congressman Frelinghuysen will chair a committee that oversees nearly $1 trillion in annual spending, making it one of Washington’s most powerful committees. We applaud all that Congressman Frelinghuysen has done to support rare disease research efforts, in particular his strong support for Sturge-Weber research. 


The Sturge-Weber Foundation’s (SWF) mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark conditions through collaborative education, advocacy, research and friendly support.  The SWF is headquartered in Congressman Frelinghuysen’s district and has seen firsthand his strong support for the Sturge-Weber community. 

Highlights from the 2016 Sturge-Weber Foundation International Research Network Meeting in Atlanta, Georgia



Sturge-Weber Foundation Names University of Illinois Professor Jeffrey Loeb as Chief Clinical Strategist


Jeffrey A. Loeb, M.D., Ph.D. has been named the inaugural Chief Clinical Strategist for the Sturge-Weber Foundation.



This is a new position designed to expedite the translation of basic scientific discoveries into new therapies for those affected with Sturge-Weber Syndrome, a rare disorder involving the skin, eye and brain.  This position will report under Dr. Jonathan Pevsner, Ph.D, SWF Chief Scientific Officer.


About Dr. Jeffrey Loeb -- Dr. Loeb, the John S. Garvin Chair, Professor and Head of the Department of Neurology and Rehabilitation of the University of Illinois in Chicago, is a unique physician-scientist with an impressive basic and translational research pedigree and program.  He has combined MD and PhD training in membrane protein structure from the University of Chicago. He advanced the understanding of neuregulins in nervous system development when he was a junior faculty member at Harvard Medical
School under Gerald Fischbach.  Additionally, Dr. Loeb has advanced training in clinical neurology and epilepsy at Massachusetts General and Beth Israel Deaconess Hospitals.  He has pioneered a one-of-a-kind clinical and translational research program first at Wayne State University in Detroit and now at the University of Illinois in Chicago where is has founded the University of Illinois NeuroRepository. The NeuroRepository uses systems biology to integrate and mine big data on individual patients with epilepsy encompassing clinical, electrophysiological, imaging, histological, and molecular high throughput data (genomics, proteomics, and metabolomics). 


This has led to ground-breaking discoveries and a new computational approach to understand human brain disorders in humans.  He continues to translate his work on neuregulin signaling and develop a patented biopharmaceutical to slow microglial responses to neuronal injury and slow neurodegeneration.  Through his active clinical pursuits, he has pioneered the use of bisphosphonates to treat brain disorders associated with calcifications.


Dr. Loeb has a passion for his patients not only in the neurology clinic where he actively tackles challenging epilepsy patients, but through cutting edge translational research programs, and extensive outreach to the community.  He serves on the Board of Directors for the Epilepsy Foundation of Greater Chicago and on the professional advisory boards of both the Chicago chapter and the national organization.   Dr. Loeb travels to Peru on a regular basis for research on neurocysticercosis and its associated brain calcifications. 


This interest has led him to form a Sturge-Weber Center of Excellence at the University of Illinois in Chicago that cares for both children and adults. In this role, together with Dr. Jonathan Pevsner, Chief Scientific Officer, Dr. Loeb has been charged with moving the Foundation forward to develop a comprehensive data and tissue repository, develop translational tools between basic and clinical scientists, and push forward new therapeutics for patients with Sturge-Weber Syndrome.


   IMG 0429Rockin' Towards A Cure Raises $2700!

 Kellie Sadens Rockin' Towards a Cure Fundraiser was not only a blast for  everyone who attended but a wonderful success!  Twenty families attended, raising $2000.  With Hulu's $500 match and the couple of donations to the SWF from friends/family who weren't able to attend, the total to over $2700!  

The reason fro Kellie deciding to have a fundraiser with a musical theme is
because a doctor told them early on that Silas, their sone, might not      
develop an appreciation for music because of the area of his brain that was affected by Sturge-Weber Syndrome. However, in true rockstar fashion, Silas ignored the doctor and has grown to be a PASSIONATE music fan of his dad's favorite classic rock and his mom and sister's penchant for pop. The whole family loves Friday Karaoke night at the Rock House and so they invited their friends and family for an evening to celebrate defying the odds and embracing their inner rock star. 


14859496 10157605323570133 1814071991 o    Spaghetti Dinner FRIENDraiser in Napanee Raises over $1700!

    A Spaghetti Dinner Friendraiser was held in the small but mighty town of Napanee. Not only      did the community step up and make the Friendraiser a huge success but also surrounding  
    communities. There was a huge storm just before it was time for the dinner to start and there
    was concern that there would be a power outage and most wouldn't make it. The dinner was 
    held at Crabby Joes and they served over 90 plates of spaghetti on top of other patrons that
   night. Nicole Deutekom, little Max's mom, and the rest of their brood came all they way down       from Peterborough in the storm. It was a busy, exciting and heart warming night. They were able to raise $1,885.00 that night and $1,713.00 went to the Sturge Weber Foundation.