The Luka The Lion Foundation honors Luka Fisher, born March 4, 2014 also known as "March Forth," who fought bravely like a lion his entire life. With a rare disease that is thought to be unique to him after extensive diagnostic testing, Luka endured a lifetime of medical treatment to earn a total of 48 feel of Beads of Courage. On this necklace, each bead represents every day and procedure of his 10 hospitalizations and frequent clinic visits. Luka did this all while teaching us to embody the characteristics of a lion of beauty, bravery, strength, and resilience -- and to always remember to roar. Despite his passing away at nearly 21 months on December 1, 2015 and #GivingTuesday, Luka continues to guide us as we give support to kids like him who brave rare disease and their care-giving families.
1 in 10 people in the U.S. have a rare disease, that's 30 million people. 80% of people who brave rare disease are kids, that's 24 million kids. Of the 7,000 known rare diseases, only 15% of these diseases have a foundation that provides support. That's an estimated 20 million kids who don't have access to a Foundation that directly supports their disease. Luka and his older brother Maks, now both angels, were two of these kids. The Fishers are that family who braved rare disease and didn't have a Foundation offering direct support. Yet, they aren't the only ones. That's why the Luka The Lion Foundation supports kids with rare diseases and their families so nobody ever feels alone -- no matter the diagnosis, or lack of diagnosis ("undiagnosed"). We address patient and family's unique needs. Without the Luka The Lion Foundation's supporters, affectionately known as The Pride, kids with rare disease and their families wouldn't have access to resources they need.
None of this would be possible without you, The Pride. You can help kids with rare disease and their families so they never feel alone and join The Pride by:
- Donate to support a patient and family's unique needs ranging from a meal outside the hospital, specialized materials not available otherwise, investment in a research fund, and a comprehensive emotional-support program. As a 100% volunteer organization, all donations are tax-deductible and directly support kids with rare diseases and their families.
- Participate in Luka The Lion Foundation events to raise awareness about rare disease, the importance of platelet, cord blood, and bone marrow donation, and how you can embody the values of the Luka The Lion Foundation.
- Roar like a lion to show your support through the #ScarfChallenge and tell us how you uniquely #Roar4Rare by running for a cause, donating your platelets, braving rare disease, making a generous contribution, and so much more.
Show the world that you are The Pride and support kids with rare diseases and their families through the #ScarfChallenge. Join World Cup Champion Super Julie Foudy, UNC Men's Basketball Coach Roy Williams, Carolina Panthers football team tight end Greg Olsen, and hundreds more displayed in the gallery of photos. It's easy!
- Order your your own #LukaTheLion scarf to support kids with rare diseases and their families. 100% of proceeds goes directly to support rare disease patient and family's unique therapeutic needs. While ordering, you can also make a direct donation to provide additional support to a rare disease family in need.
- Raise your #LukaTheLion scarf anywhere in the world that's special to you, take a photo, and share with with the world using the hashtags #ScarfChallenge, #LukaTheLion, #Roar4Rare on Twitter @LukaTheLion, Facebook, or email to firstname.lastname@example.org.
- Challenge your family and friends to join you in the #ScarfChallenge and do the same to support kids with rare disease and their families. We then challenge you to make a donation to support a kid with rare disease.
- Read more about our unique #ScarfChallenge story and how it came to be the cornerstone of the Luka The Lion Foundation so that nobody ever feels alone.
The original #LukaTheLion scarf dreamed by Daddy Zach, designed by the Fisher family including Zach, Julia, Seth & Audrey, produced by Uncle Seth, and shared by Uncle Isaac. Truly a family affair.
Click here to read the whole #LukaTheLion #ScarfChallenge story.