Was your child diagnosed with one of the ScreenPlus disorders? We understand this is a very challenging time. You may be feeling overwhelmed, scared, confused, anxious, or have other strong feelings. Know that what you are feeling is normal and you are not alone. Please see below for a list of resources to help you through this challenging time.
For help getting started, learn about the different types of advocacy groups and ways to connect with other affected families.
Cure MLD is offering support to newly diagnosed families of any of the 14 rare disorders detected by ScreenPlus.
One of these rare disorders is metachromatic leukodystrophy (MLD). That is why the patient advocacy group, Cure MLD, is looking to provide support for families affected by any of the disorders detected through ScreenPlus.
We are pleased to connect you with Family Support Coach, Dr. Al Freedman.
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. However, 25 years later, Dr. Al wants people to know that Jack continues to bring joy into so many lives, including his own.
Through this service, you will be able to have two support sessions with a Family Support Coach at no cost to your family. After speaking with Dr. Al, he will point you to more resources and information as you wish.
These sessions are not part of the ScreenPlus research mission; they are purely for your benefit. As such, what happens during the sessions will remain 100% confidential between you and Dr. Al.
How do I get in touch with Dr. Al?
It’s easy! If your baby has an abnormal ScreenPlus result, all you have to do is connect with Dr. Al’s team, and they will reach out to you about next steps.
Get in touch with Cure MLD’s Program Manager, Marly McGowan (marly@curemld.com) , who will connect you with Dr. Al.