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.
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.
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.
February 28, 2023
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.
January 2023
Annual 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.
November 15 - December 31, 2022
KrabbeConnect Year-End Giving Campaign
Many families impacted by Krabbe disease often need relief from time to time. Help with a mortgage or rent payment because their loved one has been hospitalized for more than 4 months. Assistance in covering expensive medicines. Financial support for a therapy that brings their loved one pain relief. Or simply just a little holiday boost to feel supported during a burdensome journey navigating Krabbe disease.
May 1 - 30, 2022
2022 #CureKrabbe Summer Challenge
Are you ready for the #CUREKRABBE challenge? The Krabbe community of patients and their caregivers are challenged each day due to their Krabbe disease diagnosis. KrabbeConnect works to help families with these challenges by advancing research, providing family support, enhancing education, and raising awareness. KrabbeConnect believes in working together to help assure a better life…
February 28, 2022
2022 Rare Disease Day
February 28, 2022 is Rare Disease Day, otherwise known as RDD or #rarediseaseday. Many families in the rare disease community manage feelings of, isolation, depression, exhaustion, limited resources, lack of treatment and available resources as a result of a rare disease diagnosis. At KrabbeConnect we are dedicated to those who are impacted by Krabbe disease. …
September 24, 2021
2021 A Million Dreams Gala
Looking for the 2022 Gala? Click here! KrabbeConnect’s “A Million Dreams” Virtual Gala 2021 Friday, September 24, 2021 The, A Million Dreams,” gala came to fruition in 2019 to expand awareness and further educate our community of followers on our journey to #curekrabbe. Leaders in the lysosomal and leukodystrophy disease space, fellows in the medical…
July 15 - August 15, 2021
2021 #CureKrabbe Summer Challenge
Click Here to Register Click to download My Virtual Mission app Are you up for a challenge this summer? Our community of patients are challenged each day due to their Krabbe disease diagnosis. KrabbeConnect works to help families with the challenges of Krabbe disease by advancing research, providing family support, enhancing education, and raising awareness….