Our History

The idea for KrabbeConnect originated from the 2015 Family Centered-Krabbe Translational Research Network meeting (FC-KTRN), a collaborative meeting between researchers and families to aid in solving the uncertainties of Krabbe disease.  Through KrabbeConnect, the foundation provides a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease.

KrabbeConnect’s dedication and efforts will advance research, provide family support, enhance education, and raise awareness, one step at a time.  The organization will encourage patients, caregivers, medical scientists, clinicians, industry, and the government to work together quickly to assure a better life for patients.  KrabbeConnect believes advances are made when we align ourselves with the same goal, improving the quality of life of those diagnosed with Krabbe disease.

Description of “A Million Dreams Gala”

A Million Dreams Gala is KrabbeConnect’s first premier event.  Leaders in the lysosomal disease space, fellows in the medical community, influential gene therapy companies and friends of the foundation, will be in attendance. 

This event will focus on raising awareness and proceeds towards enhancing health and wellness for those affected by Krabbe disease.  Krabbe disease is a severe neurological condition that results from the loss of the protective covering (myelin sheath) surrounding the nerve cells.  This protective myelin sheath is essential to insulate the nerves and ensure the rapid transmission of nerve signals throughout the body.  Most patients are diagnosed prior to the age of 2 and live a shorten life. 

We have a lot of work to accomplish for those suffering with Krabbe disease.  Our goal for this gala is $60,000.  This may seem lofty, but our dedicated board is working hard to execute the goals for 2019.  These goals include adding medical resources allowing every patient to receive a specialized care evaluation from a Krabbe disease expert, conducting a patient focused drug-development meeting to evaluate the perspectives and therapeutic needs of our patient population, expanding our KrabbeConnect Library, and adding valuable content to our website so families can make the best decisions on where to obtain care, transplant, end-of-life preparations, newborn screening and participate clinical trials.  

Please, grab your party dress or black-tie ensemble and come party with a purpose!  Guests will be dazzled with an evening of mingling, fabulous entertainment, scrumptious food, and dynamic live and silent auction items - all to raise proceeds to support KrabbeConnect’s vision; a day in which each patient receives early diagnosis, state-of-the-art care, and lives a life free of disease.