Briannes Leap of Hope

Research

Brianne’s neurological condition remains somewhat of a mystery; even though we found out she did have demyelination of the white matter which was evident on her MRI, tests indicated she did not have one of the known types of leukodystrophy. Apparently, that is the case roughly fifty percent of the time with children who have demyelination. We have been told she most likely suffered from a mitochondrial disease which in turn could cause the myelin to degenerate. We ran out of time to find out what caused Brianne’s illness, but chose to help fund research into leukodystrophy as it was something tangible that we could do as a family to help her.

There are many teams of researchers, scientists and doctors around the globe who are working diligently to find a way to early diagnosis, treatment and ultimately a cure for leukodystrophy and other rare, metabolic diseases. Ongoing research is extremely costly; therefore any donations that could be made to these amazing groups are greatly appreciated.

Listed below are a few of these organizations who although may have different avenues and theories for research, are none the less dedicated to achieving a common goal, a cure and treatment to these horrible, life limiting neurological illnesses. If you would like to support either of these Charitable Foundations, please do so with mention of Brianne’s name, if it was through her precious journey that you are generously making a donation.

Please visit the websites provided for further information on each of these Foundations.

Bethany’s Hope Foundation- www.bethanyshope.org

MLD Foundation – www.mldfamily.org

The Myelin Project- www.myelin.org

National Organization for Rare Disorders Inc. - www.rarediseases.org

The Stennis Foundation- www.stennisfoundation.org

United Leukodystrophy Foundation- www.ulf.org

United Mitochondrial Disease Foundation- www.umdf.org