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Circle of Love, A monthly e-newsletter for The Pride: How Do You #Roar4Rare? #LTLCubPride & Prayers for Sadie Bug
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Circle of Love, March 2017

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

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:

  • #LukaTheLion #ScarfChallenge -- with an unbelievable Photo Gallery show of support. 
    • Florence Forth 2017 -- 26 people strong on team #LukaTheLion / Lakewood
    • Amsterdam -- Thanks to Mandy Laird
    • New York City -- Thanks to Mr. Newlon
    • Blue Ridge Mountains -- Thanks to Babcia and Ollie
  • Supported a family financially to help pay for medication that was not paid for by medical insurance and to alleviate costs associated with 4+ years of treatment, additionally all LTL donations received during February & March 2017 will be donated directly to the family
  • For Rare Disease Day 2017, handed out Global Genes ribbons to every student and teacher at Morehead Montessori, engaged the upper elementary class on how we can #Swab4Sheldon and the importance of studying science and finding cures to rare diseases -- thanks to the Morehead PTA and Mr. Eaton's class
  • Shared educational resources for teachers and families on how to talk to kids about rare and genetic resources 
  • 30 people gathered at the 2nd Annual Spaghetti Potluck to honor Luka with food, fellowship, and gifts for kids at the clinic/ hospital and for the Florence Forth 2017 race -- the capes were awesome!
  • Engaged with partner organizations including Morehead PTA, UNC Lineberger Comprehensive Cancer Support Program, UNC Pediatric Hematology-Oncology Clinic, NC Rare Disease Coalition 
 

How do you #Roar4Rare? Complete our quick questionnaireEmail us, Tweet Us, join our public Facebook group for The Pride, like our Facebook page, and watch our videos on youtube.


UPCOMING EVENTS | Join Team #LukaTheLion


Join #LTLCubPride

We've been asking ourselves, "How can we get kids involved with the Luka The Lion Foundation to #Roar4Rare?" The answer has been right in front of us -- led by kids themselves. Here's some creative, grassroots ways kids #Roar4Rare to raise awareness for rare diseases and support kids so they never feel alone. Share your ideas with us as we form the #LTLCubPride -- more to come!

  • DONATE TOYS & CHORES/FUNDRAISER MONEY: Perhaps the most touching donations we've received has been from a brother and sister who donated $70 of their chores money to LTL to help other kids with rare diseases -- we've also been touched by kids bringing toys to give and selling their old toys to raise money for the cause!
  • WRITE & COLOR CARDS: Decorating and writing heartfelt cards to kids at the clinic/hospital go a long way to show that you're never alone and people are thinking of you, share your cards with us and we'll get them to kids treated at the clinic/hospital -- we can even arrange a pen pal program!
  • RACE, PLAY & CHEER US ON: Even the smallest of fans can ROAR big, cheering on runners and sprinting in the kid's cape race or kicking the ball around in our #ROAR4RARE soccer game -- all of which raises awareness for rare diseases


  • WEAR RIBBONS & LEARN: Wear a Global Genes ribbon to show that you care for rare  -- then hand out ribbons to fellow students and teachers to learn about what it means to have a rare disease and what you can do to help -- learning science now to find a cure later!

 

AWARENESS | 1 in 10 people have a rare disease. That's 33 million people in the U.S. Half of these people are kids. 

WHAT WE'RE READING | #RareDisaeses

SUPPORT | ALWAYS REMEMBER TO ROAR!

 

#Roar4Rare: Prayers for Sadie Bug

All our hearts and prayers are with Sadie's family and her caregiver team. Her spirit will be with us always. We'll never forget her necklaces, beads and princess attire. How she taught all of us in the clinic how to have fun in the playroom. How much she loved her baby sister. How she was beloved. Sadie was the kind of person you learned how to be a better person from just by watching how she carried herself.

Please join us in making a donation to support Sadie's family after 4+ years of treatment, and all donations  the Luka The Lion Foundation receives in February and March 2017, we will donate directly to the family. Together our #Roar4Rare is stronger than ever. Our lion and lady bug meet again.

 
 
 
 

You are The Pride! 
How can you #Roar4Rare to help us support kids with rare diseases and their families?

1. Need a #LukaTheLion Scarf 2.0? 
  • 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. 
2. Do you shop on Amazon? YES!
  • Click here to link up your Amazon account with Luka The Lion Foundation so that 0.5% of eligible purchases can go directly to our nonprofit. 
  • The trick is you ALWAYS need to start your shopping at smile.amazon.com 
  • Invite 2-3 people in your life who are AVID amazon shoppers and ask them to link up their account to Luka The Lion Foundation to help kids with rare diseases and their families so they never feel alone
3. How  do you #Roar4Rare for kids with rare diseases?
  • Tell us!
  • 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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