Join the Movement and #SaveTheBoys with Brian’s Hope
Sad news today – Augusto Odone, the World Bank economist who defied the medical establishment to treat his son Lorenzo with ’Lorenzo’s Oil’ has passed away. Odone gained recognition with his wife Michaela for their efforts to keep Lorenzo alive after they learned of his ALD diagnosis and its devastating progression. The Odones’ story was …Read More
Brian’s Hope: Hammerfest Triathalon Part of ‘ripple effect’ of Foundation Named After Brian Kelley
Thank you to The Shoreline Times for this great article about the “ripple effect” of Brian’s Hope! Read it here.
Senate Bill 465: An Act Requiring Newborn Screening For Adrenoleukodystrophy Passed through the Public Health Committee Monday, March 11
By Lisa Reisman – The Shoreline Times Published: Tuesday, March 12, 2013 On a crisp early-March Sunday afternoon, a small bipartisan group of state lawmakers came together. Not to grab at each other’s lapels meting out compromise deals in a shadowy cloakroom, but amicably, in the soft-lit Branford living room of Brian Kelley. One pressing …Read More