December 31, 2026
Bridging the Distance to Specialized Care
Every family deserves the opportunity to access specialized Krabbe disease care, regardless of where they live or their financial circumstances.
This year, KrabbeConnect invites you to be part of something meaningful as we work to launch a new patient program designed to help families affected by Krabbe disease access specialized medical care.
Krabbe disease is a rare and progressive neurological disorder that requires specialized knowledge and ongoing medical evaluation. Unfortunately, there are only a handful of medical centers across the country with extensive experience in Krabbe disease. For many families, accessing this expertise means traveling hundreds or even thousands of miles from home.
While insurance may cover the medical appointment, the expenses associated with airfare, lodging, ground transportation, and meals often fall directly on families already navigating significant medical and financial challenges.
On average, KrabbeConnect receives approximately 15–20 requests each year from families needing financial assistance to travel for medical care. We believe the cost of getting to a specialist should never be the reason a family goes without the opportunity to seek specialized care.
Introducing Our New Specialist Travel Assistance Program
Through this new initiative, KrabbeConnect hopes to help families travel to a Krabbe disease specialist at least once annually, if they choose.
These visits can provide important opportunities to:
These visits are not simply medical appointments. They offer families knowledge, guidance, reassurance, and an opportunity to make informed decisions about their loved one’s care.
Your Gift Can Help Bridge the Distance
We estimate that a four-day trip for a patient and caregiver can cost approximately $2,500 in travel-related expenses alone.
With 15–20 families requesting travel assistance each year, our goal is to raise $50,000 to help establish and sustain this much-needed program.
Double Your Impact Through Our Year-End Match
This year, we are seeking generous partners to help make every donation go further through a year-end matching gift campaign.
With a dollar-for-dollar match, your contribution could have twice the impact, helping more families overcome the financial barriers that stand between them and specialized Krabbe disease care.
A $100 gift becomes $200. A $500 gift becomes $1,000. A $1,250 gift becomes $2,500 — potentially covering the estimated travel expenses for one family.
Matching opportunities will be available once matching commitments are secured and will be subject to the campaign’s matching limit.
Why Your Contribution Matters
For a family navigating Krabbe disease, the opportunity to meet with a knowledgeable specialist can provide something invaluable: answers, direction, and confidence in their care decisions.
Your generosity can help remove the financial obstacles that make these visits difficult, while also supporting opportunities for clinical data collection and research that may benefit the broader Krabbe community.
How You Can Help
Join us in making specialized care more accessible to families affected by Krabbe disease.
Make a donation. Double your impact. Help a family get to the care they need. Donate Here: https://secure.qgiv.com/for/yecamp/
Spread the Word
You can also make a difference by sharing this campaign with friends, family, and colleagues. Every contribution and every shared message helps us reach more people who believe that access to specialized care matters.
Together, we can bridge the distance between families and the specialized care they deserve.
Thank you for supporting KrabbeConnect and helping us build a future where financial barriers do not stand in the way of accessing knowledgeable, compassionate care.
To better understand the impact of Krabbe disease, we invite you to visit our YouTube channel and watch the powerful stories of families who have shared their journeys with us over the years.
