Below are a number of other resources, links and information you may find helpful.
Angel Flight East
Facilitates free air transportation for children and adults with medical conditions who need to get treatment far from home.
Leukodystrophy Family Forum
This is a community of families living with leukodystrophy. A place to find courage, strength and hope in the stories of amazing families. They have addressed the most frequently asked questions and common issues shared by the leukodystrophy community and have many resources available to families.
Often your hospital and social worker will know of or offer support groups for families during and after care. Below are a small portion of the support groups offered in various states.
Hope and Healing Center
Grief Support Group
Los Angeles, California
UCLA Health & Mattel Children’s Hospital
Comforting Hearts Bereavement Support Group– for parents and siblings of UCLA pediatric patients that have passed away
Neonatal Intensive Care Support Group– for parents, families and caregivers of patients during their hospitalization at Mattel Children’s Hospital UCLA
Pediatric Intensive Care Support Group– for parents, families and caregivers of patients during their hospitalization at Mattel Children’s Hospital UCLA
Durham, North Carolina
Duke University Health System
They offer a variety of grief support groups (loss of a child, loss of a spouse, etc.)
They also offer a Camp ReLEAF for children between kindergarten and 8th grade who have dealt with a significant loss. This year (2017) it is April 28th – 30th.
Massachusetts General Hospital
They offer a support group for children, teens, and parents who have lost a spouse or sibling.
Facebook also has a leukodystrophy page (a closed group called "Leukodystrophy") and it is a great way to connect with others who may be experiencing similar challenges. Members post articles, questions and much more.
An unfortunate fact about leukodystrophy is that most individuals will pass away from the disease. Since the disease is so rare, tissue donations (such as the brain or cerebrospinal fluid) are an important method to advance the science and research of underlying causes and potential treatment. Donations such as these are an incredibly personal decision for the family, and no one should feel pressured to donate or not donate. However, if you feel led to donate, below are avenues to do so. Tissue donation should be arranged for as quickly as possible after the patient passes to ensure maximal research value.
The Human Brain and Spinal Fluid Resource Center
University of Californa, Los Angeles
Los Angeles, CA
UMB Brain and Tissue Bank
University of Maryland School of Medicine
(800) 847-1539 or (410) 706-1755
University of Miami Brain Endowment Bank
University of Miami
Harvard Brain Tissue Resource Center