Support & Care

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Fellow advocates, we are here to support you!  See our list of resources below to get started.  You are also welcome to contact us at any time for further guidance.

We will host a Leukodystrophy Newborn Screening Meeting open to all patient advocates to support all initiatives that advance the cause of newborn screening for leukodystrophies in the US and beyond.

For patient families

Introducing: Family Support Coach

Dr. Al Freedman, Ph.D

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If you have a child that was recently diagnosed with leukodystrophy from newborn screening, we understand that this is a very challenging time.  You may feel confused, overwhelmed, scared, or have other strong feelings.  We want to provide a resource to help you through this challenging time.  In collaboration with Cure MLD, we are offering guidance for newly screened families 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.  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

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.

Getting in touch with Family Support Coach, Dr. Al

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.

Support Group

We will provide emotional and psychological support for families impacted by newborn screening so they can have a safe space to discuss their worries and concerns with Family Support Coach, Dr. Al.  He has dedicated 25 years to supporting families impacted by rare, neurological diseases.

    • Experienced counseling Psychologist
    • Dedicated 25 years
    • Safe space to discuss worries

Fill out the short screening form today to connect with Family Support Coach, Dr. Al, and to learn more about the support group.

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