Most of us on the board are aware of the Team Sanfilippo Foundation started by Villanova alum Carl Kapes, whose two sons are affected by the disease. I think there may also be at least one poster whose family has been affected by this disease - I apologize that I do not remember which one, if true -- but in any event, many of us have donated to this great cause and remember the games where the cause was celebrated.
Carl was on the Preston and Steve show here in Philly this morning, along with Tim Miller, the CEO of Abeona Therapeutics. Mr. Miller's company has been working to develop treatment for the disease and seems to work hand-in-hand with Carl's foundation.
In a great piece of news, Mr. Miller announced that a clinical trial for Sanfilippo treatment that his company had developed has just this morning been given FDA approval to go forward. The trials will go forward shortly, with up to fifteen children being part of the study.
Though I know very little about the trial itself or the treatment, Carl was overjoyed with this news and it certainly seems to be a fantastic development in the fight against this awful disease. There is surely a long way to go, but this is a terrific accomplishment and hopefully the clinical trials will go well.
This Labor Day, Carl is also going on a climb of Mt. Rainier with Nick McIlwain from the Preston and Steve show and Mr. Miller in a further effort to raise funds for research and the trials. You can find out more about the climb at this link:
http://teamsanfilippo.org/events
Apologies for the OT post, and further apologies if anyone knows more about these developments and knows better information than me (I'm just reporting what I heard this morning). That said, I thought the Nova Nation should be aware of this terrific development. I know many have donated their time, energy, and/or funds to this cause -- those efforts are being put to terrific use. Congratulations to Carl and Team Sanfilippo -- keep up the great work!
