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Circle of Love, A monthly e-newsletter for The Pride: 
New website, logo & facebook page! How Do You #Roar4Rare? Pre-Order Scarf 2.0, Rare Disease Day is Everyday NC Legislative Event, Family Soccer Game, Rare Disease Spotlight: HLH, What We're Reading, #Roar4Rare Spotlight: Allison Bashor, Anna Kate Design & Ruffneck Scarves
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Circle of Love, May 2016

A monthly e-newsletter for The Pride
@LukaTheLionwww.lukathelionfoundation.org | FB Group | FB Page

A 501(c)(3) nonprofit organization that raises awareness for pediatric rare diseases and supports patients and their families so nobody ever feels alone.

How Do You #Roar4Rare?


Thanks to The Pride of the Luka The Lion Foundation, in this past month, here's how we #Roar4Rare:
  • NEW LOGOS!
    • Thank you Anna Kate Design!
  • NEW FACEBOOK PAGE! 
    • Like us!
  • NEW WEBSITE! 
  • 2 more families braving rare disease received individualized support including facilitating an emergency home cook meal and temporary housing solution
  • #LukaTheLion #ScarfChallenge -- with an unbelievable Photo Gallery show of support. 
    • The Great Human Race -- Thanks to Team #LukaTheLion, Wool. E. Bully, and runners Allison Bashor, Eila Voloshen, and Julia Fisher at the finish line
    • Tar Heel 10 Miler -- Thanks to runner and friend Allison Bashor
    • Friday 5K -- Thanks to friends Megan Grimaldi and Gretchen O'Sullivan 
    • World Cup Champion and US Soccer Hall of Famer Brandi Chastain -- Thanks to friends Meghan Foncesca and Emily Gelblum
    • UNC Writing Class -- Thanks to fellow writer Elizabeth 
    • A Florida Mother's Day -- Thanks to Luka's great-grandparents
    • Ruffneck Scarves blog -- Thanks to Jeff and the team at Ruffneck Scarves 
    • #BubblesForHudson -- Thanks to the Lakewood YMCA bubble machine to honor the spirit of Hudson and her family
    • St. John's Hospital Gift Donation -- Thanks to the Hammer Family 
  • Ran, walked, or Zumba'ed a total of 103 miles during April 2016 in honor of National Primary Immunodeficiency Awareness Month and thanks to Team #LukaTheLion on charitymiles.org, especially runner Tony Majewski who is making a dash to first place on our team!
  • 9 people participated on Team #LukaTheLion at The Great Human Race 5K on April 30, 2016 with proceeds of the registration fee and The Big Give online donation portal going directly to the Luka The Lion Foundation.  There's still time to donate to help us reach our goal of $1,000 for this campaign!
    • During the final lap, an anonymous donor will contribute 5% of all donations made during the month of May. Can you help us raise the remaining $240 to support kids with rare disease and their families? Click here to make your donation today. 
  • By sharing our Rare + Undiagnosed Story about Luka and Maks, we raised awareness of what it's like to be undiagnosed and still waiting on #UndiagnosedDay April 29, 2016.  Traffic on our website was up over 1,000% thanks to readers around the world. Our hope is that by reading our story, there's at least one person out there who doesn't feel alone anymore. 
  • Published our  #ScarfChallenge story on the national outlet, The Mighty, and thanks to The Pride and Ruffneck Scarves' blog for helping to make this an international movement of support for kids with rare diseases and their families -- so nobody ever feels alone. 
  • Invited to serve on the Global Genes RARE Foundation Alliance and the Rare and Undiagnosed Network (RUN) Advisory Board to provide insight into the world of being rare and undiagnosed, and advocating for others. 
  • Engaged with partner organizations including Global Genes Foundation Alliance, Rare and Undiagnosed Network (RUN), NC Rare Disease Coalition, and Taylor's Tale.
  • Honored nurses at the UNC Pediatric Hem-Onc Clinic, UNC PICU, UNC Children's Hospital 5 Children's teams who supported Luka and his family -- and kids with rare diseases -- during #NursesWeek all day, every day, 365 days a year.
  • Looking forward to and preparing for a Luka The Lion Foundation Board Meeting on May 22, 2016 with the theme "Narrowing the Focus."
  • Read on for all our results since incorporation just three months ago.
How do you #Roar4Rare? Email us, Tweet Us, or join our public Facebook group for The Pride and like our Facebook page 

UPCOMING EVENTS, AWARENESS & SUPPORT

                              
#LukaTheLion Scarf 2.0 -- Pre-Order today!
Thanks to the generosity of Ruffneck Scarves and unique design of Oncle Seth, the updated #LukaTheLion scarves version 2.0 are coming soon! 100% of sales goes directly to the Foundation to advance our mission. Join The Pride, raise your scarf through the #ScarfChallenge, and support kids with rare diseases!  The March Forth scarves are limited edition, and we love the touch of the butterfly to honor Luka's older brother and fellow angel, Maks. Pre-order your scarves today!

Rare Disease Day is Every Day NC Legislative Event
Tuesday, June 7, 2016 9:00 am - 5:00 pm
NC General Assembly Legislative Complex, 1100 Courtyard

Educational event hosted by the NC Rare Disease Institute that brings together patients, advocates, clinicians, researchers, pharma, biotech and more to collaborate on issues that matter to the rare disease community. Click here to register. 

                                  

1st Annual Luka The Lion Foundation #Roar4Rare Family Soccer Game
Sunday, July 24th 4:00 pm
Location TBA

Join us for a fun, family friendly, pick up soccer game to benefit kids and families braving rare disease! No soccer experience required and open to all ages and levels. We won't be keeping score, ya'll, and you can certainly sit in the goal if you'd like to and cheer us on! While it's free to play, donations are welcome to cover the cost of renting the facility and supporting kids and families with rare disease at UNC Children's Hospital. We hope to use this fun experience to grow the game into an annual family soccer tournament to benefit the Luka The Lion Foundation and advance our mission. Stay tuned for more information!

                                

Rare Disease Spotlight: Hemophagocytic Lymphohistiocytosis (HLH)
One of the genes, UNC13D, associated with Luka's unique disease is a gene that is typically associated with another rare, life-threatening, immune disease that affects mainly kids called "Hemophagocytic Lymphohistiocytosis," or HLH. It's a nasty disease that masks itself, and often is either mis-diagnosed, or diagnosed too late. While Luka didn't fit neatly into the classic HLH diagnosis, we learned a lot from the HLH community about caring for kids with rare immune diseases and the bone marrow transplant process. Even though Luka didn't fit perfectly into this "group" -- several of his doctor's fellow patients were braving HLH, often going through multiple bone marrow transplants, years of chemo and steroid treatment, now surviving and as angels. Luka's mom, Julia, also found support from an online Facebook group for HLH where she learned a life-time of knowledge from the shared experiences of kids and families braving HLH.

  • What is it?  Including a kid-friendly video explaining HLH using "Max the Angry Macrophage" from Cincinnati Children's 
  • Learn more from a mom of an HLH survivor, Hannah, and one of the pioneers in the online HLH support community who traveled far and wide to find experts to treat the rare condition
  • Praying for Camden, is a Facebook page dedicated to a baby born at 34 weeks and shortly after diagnosed with HLH now waiting for a bone marrow transplant at UNC. You may remember his mother from the ABC11 March Madness story
  • Liam's Lighthouse Foundation, Histiocytosis Association, and the Matthew and Andrew Aiken Foundation provide incredible support and treatment to kids braving HLH and their families. These Foundations have taught us how to #Rora4Rare, especially to honor our brave angels.

WHAT WE'RE READING: #RareDisaeses

ALWAYS REMEMBER TO ROAR!

People ask us, "What does it mean to #Roar4Rare?" It's entirely up to you and how you embody the characteristics of a lion and the values of the Luka The Lion Foundation. We all roar uniquely, but whatever you do, always remember to roar!  Read more on our #Roar4Rare blog, and tell us how you roar. 

       

#Roar4Rare: Allison Bashor
We are honored to have Allison's support 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: Anna Kate Design 
We are honored that Anna from Anna Kate Design created our Luka The Lion Foundation logos and the #LukaTheLion scarf image -- all from the kindness of her heart. The logos are a perfect representation of how we will always remember to roar thanks to these beautiful images. Can't wait for you all to see how use will use the #LukaTheLion scarf image in an upcoming #Roar4Rare action campaign!

                   

#Roar4Rare: Ruffneck Scarves
We are honored that Jeff, Jim and the entire company at Ruffneck Scarves not only helped us create our unique symbol of support, the #LukaTheLion scarf, but also made a generous in-kind donation to help the #ScarfChallenge movement continue with the meaningful version 2.0. 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. Click here to read more about the #ScarfChallenge story featured on The Mighty and the Ruffneck Scarves blog.

Can't wait to get the new #LukaTheLion scarf version 2.0? Click here to pre-order. The March Forth scarves are limited edition!


                                                              

You are The Pride!
Tell us how you #Roar4Rare for kids with rare diseases and donate online to support a kid braving rare disease and their family by providing unique, individualized support. Thanks to you, The Pride, we're amazed at our results so far to help kids with rare diseases and their families so they never feel alone.

You are The Pride. Kids with rare diseases and their families thank you. 

Always remember to roar,

Julia and Zach Fisher on behalf of the Luka The Lion Foundation Board of Directors

For more about our story, visit: www.lukathelionfoundation.org 
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