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Circle of Love, A monthly e-newsletter for The Pride: 
How Do You #Roar4Rare? Scarf 2.0 order, Family Soccer Game, 13.1 registration proceeds, Rare Disease Spotlight:, What We're Reading
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Circle of Love, June 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:

  • Like us on our NEW FACEBOOK PAGE!
  • 2 more families braving rare disease received individualized support including facilitating a scholarship for a highly selective academic program and a busy bag for procedure distractions
  • #LukaTheLion #ScarfChallenge -- with an unbelievable Photo Gallery show of support. 
    • Rogue Wave Circle of Love  -- Thanks to Zach Fisher, the band, and the other 30 people at Cat's Cradle
    • Yellowstone, the Grand Tetons and other beautiful national parks -- Thanks to nurse Carrie and mother nature
    • Luka The Lion Foundation Board or Directors at the Inaugural Meeting -- Thanks to the board of directors!
    • 2.0 #LukaTheLion scarves in front of Foundation Headquarters -- Thanks to Ruffneck Scarves and founders Zach & Julia Fisher
    • Running of the Bulls 8K -- Thanks to board members Allison Bashor and Julia Fisher 
    • Caitlin Knute's ABC11 Green Screen Farewell -- Thanks to news anchor and eyewitness news reporter Caitline Knute and Newscast Director Chad Bashor at ABC11 Eyewitness News 
    • Rare Disease Day is Everyday in NC Legislative Event -- Thanks to the NC Rare Disease Institute, Council, and Coalition, Chair Dr. Cairnes, Associate Chair Tara Britt, Dr. Philip, and board member Allison
    • Tobacco Road FC YMCA Night -- Thanks to Team #LukaTheLion and Team #TRFC
    • UNC Hospital, 6th Floor -- Thanks to bravery
  • Shared our story with the Durham YMCA about our unique connection with the Outley family over rare diseases, and how we helped each other never feel alone: read more
  • Participated in the NC Rare Disease Institute's Rare Disease Day is Everyday Event video and in attendance to raise awareness about rare diseases at the NC Legislature on June 7, 2016 with over 115 physicians, researchers, patient advocates, foundations, biotech, and pharma representatives
  • Engaged with partner organizations including Global Genes Foundation Alliance, UNC Health Care, UNC Pediatric Hematology and Oncology Department, and UNC Comprehensive Cancer Support Program
  • Established working groups within the Board of Directors, including Governance, Collaboration, and Fundraising at the May 22, 2016 Board Meeting.

How do you #Roar4Rare? Complete our quick questionnaireEmail 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 -- Order Today!
Thanks to the generosity of Ruffneck Scarves, Sertug's hearth-filled factory, and the unique design of Oncle Seth, the updated #LukaTheLion scarves version 2.0 are here!

  • NEW DESIGN: Order your scarves today! 100% of sales goes directly to the Foundation to advance our mission. 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.
  • JOIN THE PRIDE! Raise your scarf with the #ScarfChallenge, share with us, and support kids with rare diseases and their families so nobody ever feels alone. 

                       

1st Annual Luka The Lion Foundation Family Soccer Game 
Sunday, July 24th 4:00 pm
Location: UNC Hooker Fields (Intramural Fields) thanks to our friends at Carolina for the Kids

  • REGISTER: Stay tuned for info on how  to register as a participant or volunteer
  • FAMILY FUN: 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 keep score, ya'll, and you can certainly sit in the goal if you'd like to and cheer us on! 
  • GROW THE GAME: While it's free to play, donations are welcome to support 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.


                              

Join Team #LukaTheLion at the Race 13.1 Durham (5K, 10K or Half-Marathon)
Saturday, December 10, 2016 7:30 am (kids holiday fun run) & 8:00 am (race start)
1058 West Club Blvd., Durham

  • REGISTER: Click here to register and use PROMO Code "LTL131" to save 10% and a portion of your registration fee will be donated to the Luka The Lion Foundation. Be sure to sign up for Team "#LukaTheLion," too!
  • KID'S FUN: The kid's fun run is free with a suggested donation of $5 to the charity partner, Heart 2 Heart Collaborative, or an unused toy that will be donated to Duke Children’s Hospital patients. Holiday Fun Run participants will start and finish through the real Race 13.1 Durham start/finish arch and run a .5 mile loop through the race site. There will be a bounce house, face painting, and Santa Claus himself will be making an appearance!
  • VOLUNTEER: Contact julia@lukathelionfoundation if you're interested in volunteering in the Luka The Lion Foundation tent during the race.


                                

Rare Disease Spotlight: Hyper IgM Syndrome
Luka was tested for a laundry list of genes typically associated with rare primary immunodeficiency diseases. He also underwent numerous laboratory tests at the clinic in an attempt to fit into a differential diagnosis. We got close, but never found the exact diagnosis. During this waiting game, it often felt like we were "rooting for a disease" which was as dizzying as it sounds. One of the diseases that Luka inched towards possible diagnosis, but did not perfectly fit the "box" was Hyper IgM syndrome. This rare disease typically presents clinically with low IgG and elevated IgM levels, among other components. The syndrome is an x-linked hereditary condition that often results in a bone marrow transplant for treatment although the potential for gene therapy as a cure could be on the horizon. 

  • What is it?  From the Immune Deficiency Foundation (IDF)
  • Nar's Army, a Facebook page dedicated to sweet little guy braving Hyper IgM and a bone marrow transplant
  • Hyper IgM Foundation provides incredible support and treatment to kids and families braving Hyper IgM and treatment, especially by connecting patients/families to others 
  • Relevant research including reports from April 2016

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: Kristen Register Lakis
Board Member, Luka The Lion Foundation | Social Worker, UNC Health Care
Grounded both in her love for others and her faith, Kristen's life calling is to stand with vulnerable populations, to support individuals and communities on their journeys towards justice and healing, and to be an advocate for creative, positive change. Prior to graduate school, Kristen's professional experiences ranged from working on U.S. Department of Education initiatives for students with learning differences to direct mental health work with low-income clients with severe and persistent mental illness. Kristen then went on to earn her Master of Divinity Degree from Duke Divinity School and her Master of Social Work from UNC Chapel Hill. Since, Kristen's professional experiences include work as a grief counselor, a hospital social worker, and a chaplain resident at UNC Hospitals. Kristen now works full-time as a social worker for the UNC Bone Marrow Transplant Program. Kristen is in the process of seeking ordination in the Presbyterian Church USA and is a licensed clinical social worker. Click here to learn more about our amaing Luka The Lion Foundation Board of Directors. 
 
                                
 
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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