I am very grateful for the magnificent work that Elisa Seeger, Jean Kelley, Janice Sherwood, Gina Cousineau and many others are continuing to do in getting New Born Screening (NBS) for ALD throughout the United States and the resultant success. The rest of the world is awake and working on their individual country’s requirements to achieve NBS.
Professor Kohlschuetter and I have been steadfastly working on overcoming a major issue in regard to this program. There is a global tendency to only want NBS if there is a known cure. I have attached a letter that has been developed to give us some powerful patient data to resolve this issue.
We desperately need your help please! Will each of you read this letter and respond in a frank manner to either or both of the mentioned contacts please. I implore you to take a few minutes to give us your thoughts as it will contribute to the NBS programs in other countries around the world.