© 2018 The Brooks Coleman White Foundation, Inc.

OTHER RESOURCES

Below are a number of other resources, links and information you may find helpful.

Travel Support

Angel Flight East

Facilitates free air transportation for children and adults with medical conditions who need to get treatment far from home.

http://angelflighteast.org/

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.

leukodystrophyforum.com

Support Groups

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.

Houston, Texas

Hope and Healing Center

Grief Support Group

http://hopeandhealingcenter.org/support/support-groups/

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

https://www.uclahealth.org/support-groups

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.

https://dhch.duhs.duke.edu/bereavement-services/support

Boston, Massachusetts

Massachusetts General Hospital

They offer a support group for children, teens, and parents who have lost a spouse or sibling.

http://www.mghpcs.org/socialservice/SupportGroups/Bereavement.asp

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.

 

Tissue Donation

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

(310) 268-3536

http://brainbank.ucla.edu/

UMB Brain and Tissue Bank 
University of Maryland School of Medicine 
Baltimore, MD
(800) 847-1539 or (410) 706-1755

http://www.medschool.umaryland.edu/btbank/

University of Miami Brain Endowment Bank 
University of Miami

Miami, FL

(800) 862-7246

http://miamibrainbank.org/

Harvard Brain Tissue Resource Center

McLean Hospital 
Belmont, MA

(800) 272-4622

http://www.brainbank.mclean.org/