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 pages

Please Contact us to request access to these private pages.

RESEARCH H-ABC

Join a private Facebook Group dedicated to share and find information tied to H-ABC research.

TUBB4A ADVOCACY GROUP

This 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.

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 the button below to find out more and to complete the survey!

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. Gene DX provides diagnostic assistance and more.

Discover More with GeneDx - Experts in Genome & Exome Testing

Equipment Connections for Children

Equipment Connections for Children has donated over 2,000 pieces of equipment to over 1500 children living with disabilities, ​saving their families an estimated $2.5 million. They connect costly adaptive equipment from children with disabilities who outgrow the equipment to other children who need it.

The Foundation also applies for grants to help support families in need - go to our contact page to reach us.

CONNECTION TO SERVICES AND SUPPORT

The Foundation has partnered with Child Neurology Foundation to connect patients with much needed services, support and more:

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 | Preparing for your first visit with a child neurologist ... and much more. Contact us and we will connect you!

PREVENTIVE AND SYMPTOMATIC CARE

This article provides information on how to manage symptoms and care for someone living with a Leukodystrophy