In the past few years we have made significant strides in our mission to defeat ALD. We continue to be strong advocates for ALD awareness. Jean has been speaking with school nurses to advise them of the early warning signs, as many times ALD is mistaken for ADD. In collaboration with ALD Connect and bluebirdbio, we are reaching out to endocrinologists nationwide to establish better understanding of patient testing, referral patterns, treatment approaches and clinical management. We want to be sure endocrinologists and school nurses are aware of the fact that adrenal insufficiency or Addison’s disease is a symptom of ALD. This is a life saving effort as a patient can be treated with steroids to avoid crisis.
We have been proactive in our scientific and educational support of legislation in Connecticut that has been enacted and now requires ALD newborn screening of all babies born in Connecticut. We continue to work with the Department of Public Health on implementation.
Currently, we are supporting a study being conducted at the Kennedy Krieger Institute. It has the potential to not only open the avenue towards a new therapeutic approach for ALD but also to advance the understanding of the mechanisms of oxidative stress of this devastating disease.
But we can’t do it alone. We need your help to stop ALD. If you would like to volunteer at or sponsor an event, please complete the form below. We sincerely thank you for your assistance and contributions to Brian’s Hope; your volunteering, sponsorship, and donations are greatly appreciated.