Krabbe Connect

When a family hears the diagnosis of Krabbe disease, their world crumbles below their feet. This rare, devastating disorder—affecting infants, children, adolescents and even adults—strikes when the body’s system for protecting nerves begins to fail. 

For parents or caregiver, the journey often means uprooting their lives. According to Stacy Pike-Langenfeld, President of KrabbeConnect, “Costs of traveling and relocating to be near a Krabbe disease expert are high.  Families are separated temporarily (for 4-9 months) so the patient can receive a diagnosis, transplant or other treatments.” 

That’s where your match-gift comes in. For every dollar raised, KrabbeConnect will match up to $25,000—doubling the impact, and helping more families who are already struggling with:

• Out-of-pocket medical expenses, deductibles and co-pays

• Travel, lodging and living costs while away from home for treatment krabbeconnect.org+1

• The emotional strain of caring 24/7 and often losing work hours or quitting jobs to do so

Karla, a Krabbe mom noted,  "I just spent 8 hours and 7 phone calls fighting insurance for a simple wheelchair canopy—an essential item to keep her child safe while eating and outdoors. Out-of-pocket costs: $3,000. Families shouldn’t have to battle for basic care."  Your matched gift helps lift these impossible burdens and brings hope to families and patients.  

When you give today, you’re not just donating — you’re doubling the hope. With the match, your $100 becomes $200; your $1,000 becomes $2,000. Together, we do more than support families; we accelerate research, boost patient assistance, and move closer to a cure for Krabbe disease.

Let’s join together. Let’s make this match count. Let’s help families stay together, get care close, relieve the burden—and work toward a world where Krabbe disease no longer dictates the outcome.

Thank you for giving. Thank you for caring. Thank you for believing that a cure is possible.