May 15 - June 15, 2023
Are you up for a challenge this summer? Individuals diagnosed with Krabbe disease often experience challenges as a result of this debilitating disease. 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 those diagnosed with Krabbe disease, yet we cannot continue our work without your help! Please join us today to help improve your health and to improve the health of those living with Krabbe disease.
When you register, please select a team. If you do not select a team, one will be selected for you by KrabbeConnect. The teams this year represent two of our Partner With US donor advised funds. They are as follows:
Bravery for Avery Fund
Kevin and Lindsey Coupe were impacted by Krabbe disease when their daughter Avery received the devastating diagnosis at 8 months old. Kevin and Lindsey continue to fight for advances in Krabbe disease despite the passing of Avery in 2020.
You can learn more about the Coupe family story here.
Quinton’s Quest for a Cure Fund
Ryan and Laura were impacted by Krabbe disease when their first-born son, Quinton, was diagnosed with Krabbe disease. Ryan and Laura’s fund works to advance research in Krabbe disease.
You can learn more about the Nitahara family story here.
| Event Information | Details |
|---|---|
| Registration | Registration opens Saturday, April 1st at 10 am EST and closes Sunday, May 14th at 8:00 pm EST. |
| Cost | $65/person |
| Race Items Included | Access to the My Virtual Mission application for your mobile device, a #curekrabbe Koozie, 2 #curekrabbe bracelets, a magnet, milestone race postcards, and several raffle opportunities to win prizes throughout the race. |
| Race Start Date | May 15th, 2023 in Metolius, Oregon. |
| Race End Date | June 15th, 2023. The race ends virtually in Montreal, Canada. |
| Length of Race | 5883.8 miles. Remember, this is a group challenge. The more participants, the quicker we get to the finish line. The goal is to complete all 5883.8 miles no later than June 15th. |
How It Works
Step 1
Go to the My Virtual Mission website. Click signup to create an account and pay for your spot in the #curekrabbe 30-Day Challenge.
Step 2
Download the My Virtual Mission app in the App Store or the Google Play store on your mobile device. You can also log miles using a desktop computer, just click here and login.
Step 3
Go out and do your regular, distance-based exercise such as walking, running, cycling, going on the treadmill, swimming laps at the pool or whatever type of exercise you are into.
Step 4
Enter the distance you just completed via either the website or the My Virtual Mission smartphone app. Don’t forget to check out your virtual surroundings on Google Street View!
Milestones to Achieve
Remember, we are collectively exercising and logging miles as a group. Each mile a participant completes contributes to reaching the next milestone. For every milestone reached, a postcard will be emailed out with some fun insights and information in addition to a Facebook live raffle. Below you will find the list of milestones and the raffle prize for each milestone reached. Be sure to like and follow KrabbeConnect’s Facebook so you can tune in LIVE for our raffle drawings.
| Distance | Place | Description | Raffle Item |
|---|---|---|---|
| 0.0 mi | Metolius, OR | Start Line – Bridging the Border Challenge (May 15, 2023) | $15.00 Starbucks Gift Card |
| 525.3 mi | Oakland, CA | Meet Two Individuals Affected by Krabbe disease | #curekrabbe bracelets, magnet, T-shirt, and bag ($35 Value) |
| 1,271.2 mi | Phoenix, AZ | Learn About KrabbeConnect’s Hotline and Support Programs | $15.00 Nike Gift Card |
| 2,127.4 mi | Denver, CO | Meet KrabbeConnect’s Board of Directors | $15.00 Subway Gift Card |
| 2,664 mi | Topeka, KS | Meet a Krabbe Hero | #curekrabbe bracelets, magnet, T-shirt, and bag ($35 Value) |
| 2,975.2 mi | St. Louis, MO | Newborn Screening in Missouri; Meet two treated individuals | JBL Go 3 Portable Speaker with Bluetooth ($45.00 value) |
| 3,280 mi | Chicago, IL | Learn about KrabbeConnect’s Partner With Us Program | $20.00 Chipotle Mexican Grill Gift Card |
| 3,809.8 mi | Pikeville, TN | Hear from an advocate on NBS for Krabbe disease in Tennessee | $15.00 Starbucks Gift Card |
| 3,986.4 mi | Atlanta, GA | Learn about Georgia’s Newborn Screening Pilot Program | #curekrabbe bracelets, magnet, T-shirt, and bag ($35 value) |
| 4,374 mi | St. Augustine, FL | Learn about one of the supporters of the #curekrabbe challenge | $15.00 Nike Gift Card |
| 5,021.1 mi | Richmond, VA | Learn about Virginia NBS program and testing for Krabbe disease | $15.00 Subway Gift Card |
| 5,262.6 mi | Philadelphia, PA | Meet a treated individual tested at birth for Krabbe disease | $15.00 Starbucks Gift Card |
| 5,572.6 mi | Boston, MA | Learn about Gene TherapyA type of therapy that offers hope and promise for a cure for many genetic disorders. A working copy of the gene replaces the non-working copy of the gene. Gene therapy is at the forefront of many and Clinical Trials | $20.00 Chipotle Mexican Grill Gift Card |
| 5,883.8 mi | Montreal, Canada | Finish Line! | Stanley 30 oz. Adventure Quencher Tumbler ($60 value) |
Can’t participate, but want to support our #curekrabbe programs?
Sponsorships Available!
All sponsors have the chance to add their company’s logo to the digital postcards. Email info@krabbeconnect.org for sponsorship details. The deadline to participate is May 14th, 2023. All company logos need to be in PNG or JPEG.
Sponsors
