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 - October 10th
A Million Dreams Gala
Join us for our 2nd annual "A Million Dreams” Gala! This premium event is fun, educational, and gives you a chance to party with a purpose. This year’s gala will look a bit different because we’re going VIRTUAL. This means anyone from around the world can attend right from the comfort of their home.
Don’t miss your chance to connect with the leaders of KrabbeConnect, Stacy Pike-Langenfeld and Anne Rugari, as well as a few of the principal investigators working to advance curative therapies for Krabbe disease. You will learn about KrabbeConnect’s goals, hear first-hand from patients living with the disease, and you will be entertained by the evening’s activities. Registration is free! Please, join us online on October 10th, 2020.
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.
Ongoing Awareness Campaign
"Kacie" the Butterfly
Kacie is beautiful yet delicate – just like each patient diagnosed with Krabbe disease. Kacie is bright and colorful reminding us of the beauty of life and hope. Just as a butterfly and a flower were made to support each other for survival; Kacie was made to support our work at KrabbeConnect.
Please show your support by purchasing “Kacie” for your office, home, or in honor/memory of a special loved one affected by Krabbe disease. Throughout the month of September, we will take this opportunity to teach you about Krabbe disease, KrabbeConnect, and offer friendly reminders on how to purchase your butterfly keepsake.
Butterfly Plushie Supporting Krabbe disease
Cost: $25.00 + shipping*
*$5 of every butterfly sold will be donated directly to KrabbeConnect.
Ongoing Awareness Campaign
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
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 - February 2nd
Super Bowl Squares Challenge
Super Bowl squares, also known as football squares, are often a fun staple of Super Bowl parties everywhere. Last year, 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.
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