Past Events
Participate in an event and help support Krabbe research and patient support!
June 28, 2025
2025 Krabbe Family Warrior Meet-up at the United Leukodystrophy Family Conference
This family meet-up will feature Krabbe-specific scientific, advocacy, and family support sessions. This meeting is designed to empower patients and their families by providing information and tools to help navigate Krabbe disease. KrabbeConnect wants you to use this time to connect and learn from others walking in your shoes, hear from the medical and research community on […] Read More
June 1, 2025
2025 Swing for Saylor Golf Tournament
KrabbeConnect is excited to introduce a new and meaningful way to bring our community together—one that raises awareness and vital funds to support families affected by Krabbe disease. We are proud to announce the Inaugural Swing for Saylor Golf Tournament, set to take place on Sunday, June 1st, 2025, at Emerald Greens Golf Course in […] Read More
January 2025
2025 Super Bowl Square Challenge
Super Bowl squares, also known as football squares, are often a fun staple of Super Bowl parties everywhere. In 2018 we initiated this fundraiser as a fun way to drive excitement about our mission at KrabbeConnect which is, to be the source of comprehensive information and access to resources for patients with Krabbe disease. The foundation will drive state-of-the-art research by bridging the gap between science and patient knowledge. Read More
November 29, 2024
2024 Krabbe Family Holiday Grant Program
As the holiday season approaches, we understand that it can be a time of both joy and challenge for families affected by Krabbe disease. We believe in the power of community, support, and sharing love during this special time. We are excited for the third year of the “Krabbe Family Holiday Grant Program,” an initiative […] Read More
October 5-12, 2024
Anywhere Strides 5k Walk/Run to #curekrabbe!
Join us for a meaningful journey towards a cure! Anywhere Strides invites you to lace up your sneakers and join our 5k walk or run, all in support to #curekrabbe. By participating in Anywhere Strides 5k, you’re not just taking steps or running miles – you’re making strides towards a cure for Krabbe disease. Your […] Read More
Saturday, September 7, 2024
Ten Candles, Endless Hope: Tori’s Birthday Benefit to #curekrabbe
This event is new and it’s replacing our “A Million Dreams Gala.” Why? It’s important to KrabbeConnect to move things around the country giving other families the opportunity to witness the generosity of the community and to attend these special events. Welcome to the Ten Candles, Endless Hope event page, dedicated to Tori’s Birthday Benefit in support of the […] Read More
September 2024
Leukodystrophy & Newborn Screening Awareness Month
September is Leukodystrophy and Newborn Screening Awareness Month! The goal is to encourage parents, healthcare providers, and policymakers to advocate for the inclusion of more conditions, like leukodystrophy, in routine newborn screening panels. Read More
August 18, 2024
4th Annual BrAvery for Avery Golf Tournament
Kevin and Lindsey Coupe are hosting their 4th annual golf tournament to benefit the BrAvery for Avery Fund, a family-advised fund held at KrabbeConnect in memory of their daughter, Avery Coupe. We need YOU to join us for this important event. With each drive, chip, and putt, we honor the bravery of Avery and all those battling Krabbe […] Read More
March 2024
2024 March Madness
March Madness is Here!! Join our NCAA basketball tournament bracket challenge and have a chance to win some money, have fun, and help support the mission of KrabbeConnect! How to Play Step 1 Purchase Your Brackets Brackets are $10 a piece, and you can buy up to 10 brackets. To get started, just fill out […] Read More
February 29, 2024
Rare Disease Day
What are you doing for Rare Disease Day 2023? Krabbe disease affects approximately 40 to 50 patients worldwide per year but on Tuesday, February 28th we are part of one BIG FAMILY as we celebrate Rare Disease Day along with the 7,000 other rare conditions. Read More
January 2024
2024 Valentines Day Candy Drive
Sweeten hearts and change lives! Join Krabbeconnect’s Valentine’s Candy Drive. Your support will help satisfies sweet cravings and fuel research for those affected by Krabbe disease. This is a great way to show your love for others while making a difference with your purchase! Participation is simple. Here’s how it works: Shipping Rates: Rates […] Read More
December 2023
Matching Donation Superhero
We need your help! Thanks to an anonymous superhero in our community, every dollar you donate between now and December 31st will be DOUBLED! Your impact just got a mighty boost—help us unlock this generous matching gift and make your contribution go twice as far! Learn how your donation will help KrabbeConnect. Read More
November 28, 2023
Giving Tuesday
What is Giving Tuesday? Giving Tuesday is a global day of charitable giving and philanthropy that follows the Thanksgiving holiday weekend. It was created to encourage people around the world to dedicate a day to giving back to their communities and supporting various causes. The main idea behind Giving Tuesday is to counterbalance the consumerism […] Read More
September 8, 2023
A Million Dreams Gala
Join us for our 5th annual “A Million Dreams” Gala on Friday, September 8th, 2023! This premium event is fun, educational, and you can party with a purpose. It’s important to celebrate the accomplishments over the past year and fundraise to help fill necessary gaps in research and help families navigate a rare disease. For now, we ask you to simply save this important date. Tickets will be available for purchase after the 4th of July, 2023. Read More
September 2023
Leukodystrophy Awareness Month
September is Leukodystrophy Awareness Month! A leukodystrophy is a type of disease that causes degeneration of the myelinMyelin is an essential material your body uses to surround and protect nerve fibers. – or “white matter” – of the brain. Every individual requires healthy production of myelin for speed and accuracy of nerve impulses within the brain. Without a healthy myelin sheath, your nerves can’t send and receive signals properly. Read More
May 15 – June 15, 2023
#CureKrabbe 30-Day Challenge
Are you up for a challenge this summer? Our community of patients experience challenges each day due to their Krabbe disease diagnosis. Please join us for our third annual #curekrabbe Challenge: Bridging the Border run, walk, swim, bike event. Help us to help those individuals affected by Krabbe disease. Registration opens April 1st. Challenge runs May 15-June 15th. Register early to to receive your #curekrabbe swag! You can make a difference and help KrabbeConnect get one step closer to #curekrabbe. Read More
April 21 – 23, 2023
#CureKrabbe Family Conference
KrabbeConnect is hosting its first in-person #curekrabbe Family Conference in Tampa Florida, April 21st-23rd, 2023. The family conference will feature scientific, advocacy, and family support sessions. The conference is designed to empower patients and their families and caregivers by providing information and tools to help navigate Krabbe disease. KrabbeConnect wants you to use this time to connect and learn from others walking in your shoes, hear from the medical and research community on recent updates, and get to know the companies supporting Krabbe disease. Read More
November 15 – December 31, 2022