We had a great day with Mrs. Savoia and Mrs. Schingh’s fifth graders at Green Acres School in North Haven, discussing the passage of our bill and the importance of newborn screening, and the addition of ALD to the existing newborn screening panel.
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
Thank you to The Shoreline Times for this great article about the “ripple effect” of Brian’s Hope! Read it here.
We continue to work towards a day when no little boy will have to face the challenges Brian has and we’re now one step closer to making newborn screening for ALD a reality in Connecticut! In August, the Kelley family was honored to attend the ceremonial bill signing with Governor Malloy in Hartford. The newborn …Read More
Hammerfest 2013 was a great success! A heartfelt thank you to our hosts at the Owenego, the triathletes and Fun Run participants, our steadfast volunteers, sponsors and donors. A major highlight of the day was a proclamation by the General Assembly of the State of Connecticut citing September 15th, 2014 as “Brian Kelley” Day, for …Read More