Together We Can #CureKrabbe

Stacy Pike-Langenfeld, a mother  to Makayla Pike quickly became familiar with Krabbe disease, a rare neurological disease that claimed the life of her daughter at the age of 2.  Patients affected by Krabbe disease do not make enough of a specific lysosomal enzyme called galactocerebrosidase (also called galactosylceramidase, or GALC).  Babies with Krabbe disease appear healthy at birth, but their central and peripheral nervous system unravels due to not making sufficient GALC enzyme.  

At the age of 2 1/2 months, Makayla became incredibly colicky, struggled with severe and projectile acid reflux and was difficult to nourish.  At times, Makayla took 30 minutes or more to eat 2 ounces of milk from a bottle.  Within a 2 week period of time, Makayla saw her pediatrician 8 different times as Makayla's parents (Stacy Pike-Langenfeld and Jesse Pike III) became increasingly concerned about their daughter.  After a month of medical appointments and a 2-week stay at Minneapolis Children's Hospital and Clinics, Makayla's parents were presented with the devastating news that their daughter would not live long.     

Since the death of Makayla in 2003, Stacy has spent 10 years working in the rare disease and pharmaceutical space.  Today, she uses her biotech knowledge and passion to aid developments in the Krabbe disease space in hopes of reaching a day in which each patient receives early diagnosis, state of the art care, and lives a life free of disease.   

The important work KrabbeConnect's Board of Directors are doing will ensure the needs of families impacted by Krabbe disease will be voiced and key resources created to aid families through the difficult journey.  KrabbeConnect's goals are to build a collaborative movement that will bring improved science, institute data sharing, establish standards of care for all courses of treatment, provide educational videos and continuing education courses, develop an industry-standard patient registry, and be a resource for clinical trial opportunities. 

Thank you for considering a donation to KrabbeConnect.  We will be forever grateful for your generosity and kind-hearted spirit to aid our work.  Please visit our website to learn more about our organization, www.krabbeconnect.org