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Past Events

Participate in an event and help support Krabbe research and patient support!

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Sweatshirt - #curekrabbe
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:

  1. Download our social media toolkit to educate your cohort of followers and use the hashtag #krabbedisease2020
  2. 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.  
  3. 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.

2020-04-27 TShirt Fundraiser - KrabbeConnect
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!

Click Here to Learn More
Child's Hand Photo
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

Celebration of the Hands Info and Flyer
KrabbeConnect Outline Handprint

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Contact Us

KrabbeConnect
P.O. Box 264
Rosemount, MN 55068-0264

(651) 252-4117
Info@KrabbeConnect.org

OUR VISION

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.

Newly Diagnosed

  • Treatment and Resource Maps
  • Understanding Krabbe Disease
  • Infantile / Late-Onset
  • Testing, Treatment and Clinical Care
  • Transplant for Krabbe Disease Therapy

Patients & Caregivers

  • Connect with a Clinical Expert
  • Genetic Counselor/Care Team Knowledge
  • Advocating for Your Patient
  • Connect with Kevin

Research & Education

  • Research, Studies & Trials
  • Clinical Trial
  • Brain and Tissue Bank
  • Listen and Learn Webinars
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Pennsylvania (Opt-In)

Currently Krabbe disease is not automatically screened for in the state of Pennsylvania. Parents must request or “Opt-In” to have Krabbe added to the newborn screening tests done at birth.

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