#Roar4Rare Nurse Practitioner Hannah Beauchamp

GO GOLD!

September is Childhood Cancer Awareness and ACTION Month and the gold ribbon is the symbol. We're honored that Hannah, one of Luka's beloved Nurse Practioners at the UNC Hematology-Oncology Clinic, paid tribute to "Go Gold" in honor of Luka.

While Luka didn't have a cancer diagnosis, he played alongside his peers with cancer at the UNC Pediatric Hem-Onc Clinic where he visited 1-2 a week, sometimes daily his entire life. Luka had similar treatments as kids with cancer -- bone marrow transplant, chemo, steroids, G-CSF injections, IVIG, IV antibiotics and anti-fungals through a central line. We grew to know and love kids and families in the clinic of all diagnoses and stand with them to raise awareness and ACTION.

We are honored that Hannah thought of Luka and kids with rare diseases as we all GO GOLD together to raise awareness for the need for ACTION for a cure for many childhood cancers and rare blood diseases.

We're Partnering With The Mighty!

Rare Disease | The Mighty Partnership | Luka the Lion Foundation

We're thrilled to announce a new partnership that will bring our resources in front of The Mighty's wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges. 

In June 2015, I found myself one of those real people taking care of a 1 year old in the hospital as he was undergoing a bone marrow transplant in attempts to cure his rare disease. Times when Luka napped, it was just me and the beeping machines and my thoughts. I started writing those thoughts down and then realized my words could help others not feel so alone. By sharing my first article on The Mighty, "How I Trusted My Instincts Raising My Child with Rare Disease," it was really me that felt not as alone sharing our story with the world.

Today more than ever, we're dedicated to helping people with rare disease in their lives. With this partnership, we'll be able to help even more people.

We encourage you to submit a story to The Mighty and make your voice heard.

 

 

 

#Roar4Rare Nurse Liz Collins

From dear nurse Liz who cares for kids with ‪#‎RareDisease‬ and their families with a heart as big as a lion:

"These pictures were both taken in Rome. The first is in the colosseum, which I thought was not only beautiful and amazingly old, but also very fitting for Luka because he was the ultimate warrior. And an old soul. The second photo was a lion statue/ fountain we happened upon while walking around the city and it just made me think of him and his beloved water bottle 🙂 Thank you for letting me be a part of his memory. I could feel him looking down and enjoying beautiful Italy with me." ‪#‎Roar4Rare‬ ‪#‎ScarfChallenge‬ ‪#‎LukaTheLion‬

#Roar4Rare Supporter The Storyteller Studios

Our hearts will always be in the Lion's Den on 5C at UNC Children's. We are honored for Josh Hester, Principal at The Storyteller Studios, to contribute his award-winning talent to help us tell our story. Josh and The Storyteller Studios' generous philanthropy allows us to share our collective stories of Luka and his unique lion personality, the origins of the Luka The Lion Foundation, and the people we serve. Our goal with these videos is to increase awareness for rare disease, the unique challenges kids with rare disease and their families brave, and create a call to action to donate both money and bone marrow to directly support kids with rare diseases and their families. Just a glimpse of what's yet to come in fall 2016!

#Roar4Rare Marathoner Allison Bashor

We are honored to know Allison and can't thank her enough for all she does for the Luka The Lion Foundation -- from running race after race with a #ScarfChallenge at the finish line, to sending scarves all over the world -- Allison knows how to #Roar4Rare for all kids with rare diseases and their families through action.

Join Allison and The Pride on Team #LukaTheLion at the Running of the Bulls 8K in Durham on June 4, 2016 -- click here to register. 

#Roar4Rare Supporter Ruffneck Scarves

We are honored that Jeff, Jim & the company at Ruffneck Scarves helped us create our unique symbol of support, the #LukaTheLion scarf and have made a generous in-kind donation to help the #ScarfChallenge movement continue. These scarves truly do help people so they never feel alone, and we're honored to be part of the Ruffneck Scarves team of support -- The Pride. Click here to read more about the #ScarfChallenge story. 

#Roar4Rare Nurse Marathoner Johanna Blue

When Johanna isn't taking care of kids and their families on 5 Children's or graduating with a Nurse Practioner's degree, she's either training or running a MARATHON for a cause benefiting the Leukemia & Lymphoma Society. Johanna ran the Boston Marathon on April 18, 2016 for UNC Children's and we were honored that she had a lion patch on her singlet helping her roar each step of the way. 

It's no coincidence that even when Luka was fighting the most, he would walk with encouragement from Johanna.

We're honored by Johanna's #ScarfChallenge at the Boston Marathon and how she crossed the finish line with the strength and resilience of a lion. Roar!

#Roar4Rare Platelet Donor Allie Boulton

When Allie isn't sharing wellness to the Durham YMCA, lifting some serious weights, or helping people through the Livestrong Program, she's donating her platelets to potentially save a life. So far, Allie has donated not once, but twice through the Luka The Lion Foundation Platelet Parties at the UNC Blood Donation Center at the NC Cancer Hospital.  

We've watched Inside Out, snacked on popcorn, chatted about life, enjoyed the beautiful view and parking waivers -- all while Allie sat comfy cozy while hooked up to the platelet machine. She's really curious how the process works, why her platelets look like gold, and enjoys quizzing her favorite nurse. Next time, you can party with Allie and donate your platelets to a fellow Tar Heel in need. 

Allie also ran the Florence Forth Road Race on Team #LukaTheLion, zooming to the finish line as the top runner in her division for the 5K.

We're honored by Allie's living example of the bravery and strength of a lion. Roar! 

#Roar4Rare Donor Fitzpatrick Lorelli Fund

We're honored to know and love the beautiful extended Lorelli Fitzpatrick family, including all their silly chickens! 

From birthday parties to Christmas Caroling to donating to help kids with rare diseases -- this family is the definition of generosity and faith. 

We're honored by the Fitzpatrick Lorelli Fund's generous $500 contribution to supporting kids with rare diseases and how they embody the beauty of a lion. And just look at their beautiful, and silly chickens!

The silly chickens reference is thanks to big sister Maia The Bee, and you can read the whole story in the Words of Remembrance  post from December 5, 2015 in the Daily Journal.

#Roar4Rare #ScarfChallenge Lakewood YMCA

"Hello, It's always a great day at the Lakewood Y, how can I help you?" That's what you hear when someone answers the phone at the Lakewood YMCA. 

This is what you see when you walk in the door and look above the locker room keys. 

Raising awareness is sometimes that simple, and we've experienced an outpouring of love and support from The Pride affiliated with the Lakewood community and Durham YMCA. 

We're honored by the Lakewood YMCA's beauty both inside and out to show through a #ScarfChallenge that they support the Luka The Lion Foundation and kids with rare diseases and their families. With the support of the Lakewood YMCA, it really always is a great day. 

 

Like a lion with The Pride, Always remember to roar