Parent Resources

Please Contact us to request details on resources available to you. Go to CONTACT AND SUBCRIBE to sign up for our Newsletter and receive important notices.

Facebook Groups

Parent and Family member support pages

Please Contact us using the link above to request access to these private pages. You must have a confirmed diagnosis to access these support groups.

TUBB4A Advocacy Group

This public Facebook Group is dedicated to bringing families and interested advocates together to advocate as a group to raise awareness and promote more attention to and funding for research for this progressive neurological condition tied to the TUBB4A gene mutation and similar leukodystrophies.

H-ABC NATURAL HISTORY STUDY

As part of an ongoing effort to launch a robust Natural History Study on H-ABC, the team at the Children's Hospital of Philadelphia (CHOP) is reaching out to families of individuals affected by H-ABC for information on the symptoms and problems they have experienced as part of this diagnosis.

Click below to find out more on the most recent highlights from this study, details findings from a recent publication, and how to participate in the study.

TRAVEL RESOURCES

Angel Flight East provides free air transport to qualified patients and their families by arranging flights to distant medical facilities and reuniting families during desperate times.​

PALS SkyHope provides free medical flights to people who need to access medical care that may be too far to get to by car

DIAGNOSIS

Getting a complete and accurate diagnosis is critical to understanding the condition and many doctors either don’t know enough about the condition or don’t conduct the proper testing. The Foundation to Fight H-abc works with GeneDx who has diagnosed many of our patients. Below is the link to GeneDx’s Genetic Counselors at no-cost. Patients do need to have their doctor complete the referral form.

GeneDx Genetic Counseling Services

Link for Referral form: Genetic-Counseling-Referral-Form.pdf

If you are interested in connecting with a provider who can help you get a genetic test, GeneDx has a new partnership with Genome Medical.

More information here: Genetics Connection - GeneDx

Discover More with GeneDx - Experts in Genome & Exome Testing

We now have our own diagnostic code for H-abc/Tubb4a related leukodystrophy, see below

CONNECTION TO SERVICES AND SUPPORT

The Foundation has partnered with Child Neurology Foundation to connect patients with much needed services, support and more using their Unite Us platform:

Learning more about a child neurology disorder | Connecting to disease specific organizations like us | Talking to another parent | Learning about clinical trials | Navigating transitioning from child to adult healthcare | Getting digital resources such as computers | Finding food assistance programs | Navigating insurance questions | Accessing equipment and supplies | Preparing for your first visit with a child neurologist ... and much more. Contact us using the link above, and we will get you answers!

PREVENTIVE AND SYMPTOMATIC CARE

Living with Leukodystrophy is a great book providing details on how to manage symptoms and care for someone living with a Leukodystrophy. Use the link below to download an electronic copy of the book