Through this service, newly diagnosed families from newborn screening will be able to have two support sessions with a Family Support Coach at no cost. It is up to you if you want to have one or two sessions. After speaking with Dr. Al, he will point you to more resources and information as you wish.
In addition to being a parent of a child with a rare disorder, Dr. Al has been providing parent to parent support for over two decades. In 1995, his son Jack was diagnosed with a rare neuromuscular disorder called spinal muscular atrophy (SMA) at just 6 months of age. Doctors said he had one year to live. 25 years later, Dr. Al wants people to know that Jack continues to bring joy into so many lives, especially his own:
“When my son was diagnosed with a rare disease, I felt like I had been launched into the twilight zone all by myself. As a parent, I continue to find support from other parents who’ve been there. I encourage any parent whose child receives a difficult diagnosis to reach out to others who understand… “~Dr. Al, Family Support Coach
First, we just want to know a little about your family, your leukodystrophy diagnosis, and what brought you here. Fill out the short form below and Dr. Al will be in touch with you as soon as he can! Together, you will coordinate a time to meet over the phone or video conference.