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Circle of Love, A monthly e-newsletter for The Pride: 
How Do You #Roar4Rare? Rescheduled Family Soccer Game (more details coming soon!), Be Loud! '16, Kilometers for the Kids, Pedal 4 Peds, 13.1 registration proceeds, I'm a Kid with Rare Disease, What We're Reading, Grief Support Group, #Roar4Rare: The Storyteller Studios, Order Scarves 2.0, Amazon Smile
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Circle of Love, August 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:
 

  • 2  more family braving rare disease received individualized support including much needed back-to-school supplies, clothes, and shoes for three kids and visual development toys
  • #LukaTheLion #ScarfChallenge -- with an unbelievable Photo Gallery show of support. 
    • Disney World  -- Thanks to Board Member, Allison Bashor
    • Wrigley Field -- Thanks to Founder, Zach Fisher, the Fisher family, and the Cubbies
    • The Colosseum and Lion Fountain Statue in Rome -- Thanks to nurse Liz
    • Florida coast -- Thanks to Grandparents, Charlie and Stacy
    • Eastern Market, DC -- Thanks to Oncle Seth and Aunt Dey Dey
    • Euro Cup Final in Paris -- Thanks to Oncle Seth 
    • #Smile4ConCon -- Thanks to Connor, and his enduring spirit -- to infinitiy and beyond
    • Historic Greensboro Train Depot -- Thanks to Grandparent, Dziadek
  • Honored Luka and his anonymous bone marrow donor on the anniversary of his bone marrow transplant on July 3, 2016 by sharing our story of gratitude on The Mighty 
  • Celebrated #Smile4ConCon to honor Connor Outley's birthday anniversary. For more about the Luka The Lion Foundation's story with the Outleys,  our unique connection with their family over rare disease, and how we helped each other never feel alone at the Durham YMCA: read more
  • Co-produced three videos with The Storyteller Studios to tell our story, thanks to  their generous philanthropy and partners UNC Children's Hospital 5C and UNC Pediatric Hem-Onc Clinic
  • Engaged with partner organizations including Be Loud! Sophie Foundation, DTM Foundation, Durham YMCA, UNC Health Care, and UNC Pediatric Hematology and Oncology Department
  • Established working groups within the Board of Directors, including Governance, Collaboration, and Fundraising and prepared for an August 21, 2016 Board Meeting
  • Thanks to the generosity of an anonymous donor with a heart as big as a lion, we have a brand new computer to help us advance our mission to support kids with rare disease so nobody ever feels alone. #wow


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 | Join Team #LukaTheLion

RESCHEDULED! 1st Annual #Roar4Rare Soccer Game 
SAVE THE DATE: Sunday, November 13, 2016 2:00-4:00 pm
Location: More info coming soon!

  • 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.
  • WE NEED TEAM CAPTAINS! Email julia@lukathelionfoundation.org if you're interested. Captains will organize 7-11 players to join their team and play to honor someone -- a kid with rare disease, a family honoring their angel, and a nurse or doctor treating kids.
  • SIGN UP as a team captain, player, supporting fan, volunteer, or donor today!


BeLoud! '16
Friday, August 26, 2016 8:00 pm
Saturday, August 27, 2016 1:00 pm & 8:00 pm
Cat's Cradle in Chapel Hill, NC 


A  music concert to benefit Be Loud! Sophie Foundation serving adolescent and young adult cancer patients at UNC Hospital. We're honored to know and love everyone at Be Loud! Sophie and continue to be inspired at the beauty in which they carry on Sophie's light to help others. 100% of proceeds go to the adolescent and young adult cancer population at UNC Hospital. Click here to buy tickets: weekend pass, Fri or Sat only, and kids 12 and under free on Sat afternoon! 
 

“BE LOUD
AND MOVE WITH GRACE
EXPLODE WITH LIGHT
HAVE NO FEAR”
– Sophie Steiner

 


Carolina for the Kids' Kilometers for the Kids (5K or 1 mile)
Saturday, September 25, 2016 9:00 am 
UNC Old Well


Join us on Team #LukaTheLion to support a partner organization and run a 5K or 1 mile themed fun run around UNC's campus. We're excited to participate for our 2nd year in a row to raise funds for kids at UNC Hospital. As a Carolina for the Kids co-captain, Maia is excited to RUN FAST! Click here to register.
 



Pedal For Peds 
Saturday, October 8, 2016
9:00 am - 12:00 pm
UNC Wellness Center in Cary
350 Stonecroft Lane, Cary, NC


Join us on Team #LukaTheLion to support a partner organization, UNC Pediatric Hematology-Oncology Department, and ride 7, 10 or up to 50 miles on the beautiful American Tobacco Trail,. There's also kids bike safety course, stationary bikes, yoga, a farmer's market, and so much more! 100% of all proceeds raised by this event will be used to support the UNC Pediatric Hematology and Oncology Department  to care for and cure all children with cancer and blood disorders in the state of North Carolina. Click here to register. 


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

Taylor and her her sister, Laura, 2006 (Taylor's Tale)

Taylor and her sister,  Laura, 2014 (Taylor's Tale)
 
Meet Taylor.  Taylor celebrates her 18th birthday on August 19 and 10 years ago was diagnosed with Batten disease. In the words of her sister at the time of her diagnosis, "She didn't even look sick." Since then, Taylor's mom , Sharon and her family, have been hard at work advocating not only for Taylor, but for all kids braving Batten Disease and rare disease. Sharon is the founder of Taylor's Tale, a non-profit organization that is global leader in moving infantile Batten disease research forward. Last year, Sharon advocated for her daughter and for all kids with rare diseases to the NC General Assembly. The result was the creation of the first state rare disease council in the country. This year, the bill was renamed in honor of Sharon's daughter, Taylor as "Taylor's Law." 

Batten disease is unforgiving and terminal -- to date. Most kids diagnosed are from 3-8 years old. It is a neuro-degenerative disease which means that a person's ability to walk, talk, see, and interact diminishes over time. Most people diagnosed with Batten disease don't make it past 5 years of after diagnosis. Taylor has lived for 10 years with Batten disease. She's a true fighter, and so is her family. Thanks to the tremendous efforts of Taylor's family and researchers, there has been promise lately with gene therapy in a related disease, so hopefully -- one day -- there will be a cure to this devastating pediatric rare disease. Join us in our fight to CURE BATTEN. 

WHAT WE'RE READING | #RareDisaeses


SUPPORT | ALWAYS REMEMBER TO ROAR!

Grief Support Group for those who have experienced the death of a child

Tuesdays for seven consecutive weeks, September 13 through October 25, 2016  from 6:30 - 8 pm
Carolina Pointe II, a UNC facility (3rd floor)
6011 Farrington Road, Chapel Hill 

The UNC Hospitals Bereavement Support Services is offering a Community Grief Recovery Group this fall. The group is open to anyone grieving the death of a child, regardless of faith background. It is free of charge and no connection to UNC Health Care or the University is necessary. Co-facilitated by Chaplains Heidi Gessner and Hadley Kifner, this group will focus on sharing and moving toward healing in a safe and supportive setting. The grief that follows the death of a young child is a rare and unique. Some people join a support group to help them through their initial grieving process while others join years after their loved one’s death. This social support facilitates healthy grieving and often reduces feelings of isolation and loneliness. 
Please contact Hadley Kifner, Pediatric Chaplain, at 984-974-0217 or Hadley.kifner@unchealth.unc.edu with questions or interest.
 

 
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!
 
 
 

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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