AUGUST 28, 2022
Bravery for Avery Golf Tournament
The Coupe family has arranged a Family-Advised Fund in honor of their daughter, Avery, who lost her battle to Krabbe disease in May of 2020. Their fundraising efforts will go towards advancing research to help #curekrabbe. Email us at info@krabbeconnect.org to see how you can be a part of their event.
AUGUST 19, 2022
The Million Dreams Gala
Join us for our 4th annual "A Million Dreams Gala" on Friday, August 19th, 2022! This premium event is fun, educational, and gives you a chance to party with a purpose. We will definitely be in person, however, further details are pending at this time. It’s going to feel good to hug each other again and congratulate some instrumental successes in our community.
In-person guests will enjoy a program full of inspiration and promise as our community works together to help patients with Krabbe disease live their best life. For now, we ask you to simply save this important date. Tickets will be available for purchase on May 16th, 2022.
JUNE 25, 2022
#curekrabbe Annual Meeting
After much deliberation, KrabbeConnect's board of directors made the difficult decision to cancel the #curekrabbe Family meeting. The reason for the cancellation is due to the following reasons expressed by our community:
1. The health and safety guidelines of the United Leukodystrophy Foundation are difficult for families impacted by Krabbe disease to comply with.
2. The cost of travel at this time is extremely high.
3. A virtual meeting was offered however, families have expressed Zoom fatigue and are unsure they can commit to another virtual meeting.
What you can expect: KrabbeConnect is evaluating a partnership with The Legacy of Angels Foundation and the Krabbe Translational Research Network meeting. Additional details will be available in Fall 2022. Should you have any questions, concerns, or ideas you would like to share with KrabbeConnect, please do not hesitate to reach out at info@krabbeconnect.org.
2022, MAY 1 - 31
#curekrabbe Portland to Portland Challenge
Are you up for a challenge? Our community of patients are challenged each day due to their Krabbe disease diagnosis. For 31 days, we ask you to select your favorite way to log miles. You can run, bike, swim, walk, or pick another form of purposeful movement to help #curekrabbe!
2022, April 26-May 26
Neurogene Survey
At the Krabbe Translational Research Network meeting in March of 2021, CEO Rachel McMinn announced their commitment to Krabbe disease. Now, as they continue to propel their program forward for this disease, they need families with a child(ren) under the age of 18 that have been impacted by Krabbe disease. It’s important to their clinical team to understand your general perceptions of Krabbe disease, as well as your thoughts on clinical trials and treatments for this rare disease.
As a patient organization, we understand it’s not always easy completing a survey that may elicit emotions when reporting about a loved-one living or no longer living with Krabbe disease. As a token of the entire Krabbe disease community’s appreciation, we will be mailing out a $35 Amazon Gift Card to each participant for their time and gift of information that will help bring new promise to those diagnosed with Krabbe disease.
Click below to take the survey or use your phone to scan the QR code.
2022 - February 28
Rare Disease Day
Each year, many organizations across the world are involved in efforts to advance treatments, raise awareness, and bring resources to those living with a rare disease. In 2008, the European Organization for Rare Disease (EURORDIS), successfully implemented the last day of February as Rare Disease Day. At KrabbeConnect, we want to shine a light on Rare Disease Day as our community works to #curekrabbe. Learn how you can participate in this important awareness day, whether you have been impacted by Krabbe disease or one of the other 7,000 identified rare diseases.
2021 - September 24th
Super Bowl Squares 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.
2021 - September 24th
A Million Dreams Gala
Join us for our 3rd annual "A Million Dreams” Gala on Friday, September 24th, 2021! This premium event is fun, educational, and gives you a chance to party with a purpose. We will be virtual for this event again to ensure the health and safety of our immune-compromised community. However, we do encourage gala participants across the world to conduct small watch parties to drive excitement, propel disease awareness, and aid financial momentum to ensure KrabbeConnect’s programs and support services can remain strong. Guest near and afar will have the opportunity to witnesses a program full of inspiration and promise as our community works together to help patients with Krabbe disease live their best life. Take a moment now to mark your calendars because this event is going to be grand!
Miss the Gala, but still want to make a donation? Please visit: https://krabbeconnect.org/
2021 - Summer
#curekrabbe Summer Challenge
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. KrabbeConnect believes in working together quickly to help assure a better life for Krabbe disease patients yet, we cannot continue our work without your help! Please join us today to help improve the health of those living with Krabbe disease.
2021 - June 26th
Virtual #curekrabbe Family Meeting
We’re thrilled to offer a half day meeting to keep patients and caregivers abreast of important information, new programs and resources, industry updates, and valuable projects. At KrabbeConnect, we continue to work to reach a day in which each patient receives an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe disease.
2021 - February 28th
Rare Disease Day
Each year, many organizations across the world are involved in efforts to advance treatments, raise awareness, and bring resources to those living with a rare disease. In 2008, the European Organization for Rare Disease (EURORDIS), successfully implemented the last day of February as Rare Disease Day. At KrabbeConnect, we want to shine a light on Rare Disease Day as our community works to #curekrabbe. Learn how you can participate in this important awareness day, whether you have been impacted by Krabbe disease or one of the other 7,000 identified rare diseases, we encourage you to join us in our theme this year on what it means to #BeRare.
2020 - October 29th
Externally-Led Patient Focused Drug Development Meeting for Krabbe disease
Please join us for a once in a life-time opportunity to come together to help #curekrabbe. KrabbeConnect initiated an Externally-Led Patient Focused Drug Development (EL-PFDD) meeting for the Krabbe disease community. This meeting, coordinated and facilitated by the National Organization for Rare Disorders, will be conducted virtually on Thursday, October 29th, 2020 from 12:30-4:30 pm EST Detailed information on registration, sponsorship and speaking opportunities can be found here.
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2020 - September
#curekrabbe Campaign for Leukodystrophy Awareness Month
September is leukodystrophy awareness month. A leukodystrophy is a type of disease that causes degeneration of the myelin, or "white matter" of the brain. The word leukodystrophy comes from the Greek roots-leuko meaning white, dys, standing for lack of, and trophy, meaning growth. 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.
Krabbe disease is one specific type of leukodystrophy. Today, there are more than 50 different types of leukodystrophies identified. Some more commonly known leukodystrophies are Metachromatic leukodystrophy (MLD), Niemann-Pick disease, Canavan disease, Vanishing White Matter, Alexander disease, and Krabbe disease.
This month, KrabbeConnect has organized 3 different ways you can participate in leukodystrophy awareness month:
- Download our social media toolkit to educate your cohort of followers and use the hashtag #krabbedisease2020
- Purchase a “Together We Can #curekrabbe” sweatshirt from Bonfire https://www.bonfire.com/leukodystrophyawareness/ to support educational resources for patient and caregivers diagnosed with Krabbe disease.
- Consider making a tax-deductible donation to help our #curekrabbe programs, simply click on the donate tab at the top of this page.
No matter how you decide to participate in leukodystrophy awareness month, know you are making a tremendous difference and we are so very thankful for your efforts.
2020 May 1 - 18
#CureKrabbe T-Shirt Team Fundraiser
Join us for our 1st ever #curekrabbe T-Shirt Team Fundraiser. It's fun, it's easy, and there's no training required. We will kick off this fundraiser on May 1st, 2020 and it will run through Monday, May 18th, 2020. You and your team will have 18 days to sell as many t-shirts as you can. Lots of great prizes are up for grabs so don't waste any time. Act now to kick your fundraising efforts into high gear, whether you have a direct connection to the disease or not, everyone is invited to make a difference!
2020 - January 26th -31st
Children’s Week of Florida
KrabbeConnect was invited to participate in Children’s week by Lennon Foster’s family. Children’s Week is the only annual event held in the state of Florida that celebrates and honors its commitment to children and advocates. This event was once known as Children’s Day, but the decision was made by the Florida Children’s Forum to change the event to Children’s Week to honor the multiple organizations who collaborate on children’s issues at the capital building in Tallahassee.
Children’s Week begins with the, “Celebration of Hands” event on Sunday, January 26th, 2020 at 4:00 pm EST. Tens of thousands of “hand art” will be hung throughout the Capitol Rotunda Sunday Jan 26th-Friday, January 31st, 2020 creating an amazing display of children’s art. Hanging of the Hands provides a visual that each set of hands represents a child who is impacted by the policy decisions made by the legislature. This event is key to the success of Children’s Week and a great tribute to the Forum’s initial vision and collaborative spirit.
KrabbeConnect invites you to participate in the, “Celebration of the Hands.” We would like to collect as many hands as possible impacted by Krabbe disease to raise awareness about this life-threatening genetic condition. Download the flyer below to learn how you can participate!
**Please Note: Handprints must be received no later than Tuesday, January 21st, 2020