I am honored to know many people in the ALD community that are changing the face of our disease. Doctors who are searching for a cure, researchers creating new treatment options, parents raising awareness and piles of money, even some folks that are running for our cause (THAT is nuts but wonderful).
One organization, ALD Alliance, was started by a mom on a mission and has done the unthinkable — they have fought to get ALD on the newborn screening panel in many states. The job isn’t done yet and that is why I’m writing today.
Many of you have asked, “How can I help.” — Here you go folks! Please open the link HERE and if you live in one of the states of one of these subcommittee members, PLEASE reach out to the ALD Alliance and they will provide you with everything you need to help make this necessary addition to the newborn screening panel.
It won’t take more then a few minutes and will save lives (1 in 15,000 isn’t so rare for a rare disease). And, remember — if Jack had been diagnosed earlier, his life would look very different today.