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
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.
November 15 - December 31, 2022
Year-End Giving Campaign: We Need You!
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.
October 1 - November 10, 2022
Holiday Grant Program
When you’re navigating a rare disease, the holidays can be financially cumbersome for patients and caregivers. KrabbeConnect strives to help ease this holiday stress by providing financial relief to those in need.
If you or someone you know has been diagnosed with Krabbe disease and could benefit from a holiday grant, we invite you to apply. Applications are accepted from October 1st through November 10th, 2022.
September 2022
Leukodystrophy and Newborn Screening Month
September is Leukodystrophy and Newborn Screening Awareness Month! There are over 50 identified Leukodystrophies with Krabbe being one of them. Newborn Screening is a test done within the first 24-48 hours after a baby is born and can detect threatening conditions. Krabbe disease is currently only being screened in 10 states. To learn more about newborn screening and the Leukodystrophies and how KrabbeConnect is creating awareness, click on the button below!
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
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
2019 - December
Krabbe Cookie Challenge
The Krabbe Cookie Challenge is an activity involving a round cookie, like an Oreo, and placing it on your forehead. Then, with your facial muscles (meaning no use of hands) you attempt to move the cookie into your mouth. This silly and fun challenge is being used to promote awareness of Globoid Cell Leukodystrophy, better known as Krabbe disease. This awareness campaign went viral on Tuesday, December 3rd, 2019.
The challenge encourages nominated participants to be filmed having a cookie on their forehead and using their facial muscles to move it into their mouth then nominating others to do the same. The Krabbe Cookie Challenge requires nominated participants to complete their social media post within 48 hours or they can choose to forfeit by way of a charitable financial donation to KrabbeConnect.
The Board of Directors hopes this challenge allows the opportunity for individuals across the world to learn and understand that Krabbe disease is a debilitating condition that drastically shortens the lives of those living with it. So, let’s keep the momentum going. Gather some family or friends, grab a box of cookies, film the challenge and upload to social media (giggling and belly laughs encouraged) then, nominate others to participate. Together we can #curekrabbe