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 families with rare diseases received individualized support including developmental supports and Sweeps gift certificates to support cleaning and housework
- #LukaTheLion #ScarfChallenge with an unbelievable Photo Gallery show of support.
- Atlanta Braves -- Thanks to #Roar4Rare Family Soccer Game team captain, Jeff Lloyd
- YMCA Family Triathlon -- Thanks to the Fishers and supporting fans
- US Postal Service - Thanks to those who ordered scarves
- One Lotus Yoga -- Thanks to yogi sage Cammie
- UNC Hospital ER -- Thanks to the doctors who helped Zach's shoulder!
- Engaged with partner organizations including Be Loud! Sophie Foundation, Super Cooper's Red Wagon Foundation, Rare Disease United Foundation/Beyond The Diagnosis, UNC Lineberger Comprehensive Cancer Support Center, The Mighty, UNC Children's Volunteer Services, The Storyteller Studios
UPCOMING EVENTS | Join Team #LukaTheLion
1st Annual #Roar4Rare Family Soccer Game
Join us for fun, all ages, all levels 7v7 soccer games to benefit kids with rare diseases and their families!
Sunday, November 13, 2016 2:00-4:00 pm with raffle at the closing ceremony
Location: More info coming soon!
- SIGN UP: Everyone who signs up by 10/30 will receive an event t-shirt at the soccer game. You can be a soccer player, fan on the sidelines, volunteer, or sponsor! Pick a team, ask to be a team captain, or let us know if you'd like to be added to a team
- Make a difference: Free to play! Donations welcome. Proceeds go to kids and families in the UNC Pediatric Bone Marrow Transplant program.
- Sponsored by: Tobacco Road FC, Jhana, Nanataco, UNC Fertility, Perch Coworking, Durham Co-Op, Kitchen Works, Urban Durham Realty, Restoring Balance, Anna + Kate Design, Sweeps, The Storyteller Studios, Townsend Bertram & Company, Café Carrboro, IP3 Pizzeria, and Saxapahaw General Store. Interested in sponsoring? Contact Emily@lukathelionfoundation.org
- Win the Raffle! Prizes include: camping equipment rentals from Townsend Bertram & Company, beer from Bond Brothers Beer Company, and more to come!
- We need team captains: Interested in recruiting 7-11 of your friends, co-workers, and family to play on a team? Contact Julia@lukathelionfoundation.org or sign up at www.lukathelionfoundation.org/soccergame
Carolina for the Kids' Kilometers for the Kids (5K or 1 mile)
Sunday, September 25, 2016 9:00 am at UNC Old Well
As a Carolina for the Kids co-captain, Maia is excited to RUN! Proceeds go to UNC Children's Hospital.
REGISTER: Click here
Pedal For Peds
Saturday, October 8, 2016 9:00 am - 12:00 pm
UNC Wellness Center in Cary, 350 Stonecroft Lane, Cary, NC
Cycling, yoga, and more! 100% of all proceeds raised by this event will be used to support the UNC Pediatric Hematology and Oncology Department
REGISTER: Click here
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 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!
AWARENESS | 1 in 10 people have a rare disease. That's 33 million people in the U.S. Half of these people are kids.
Meet Stetson Tyler. Stetson is two years old and beloved by his family. He was diagnosed with Severe Combined Immunodeficiency Disease (SCID) when he was an infant and received a bone marrow transplant last summer-- the "ultimate gift of life" -- from the donation of his big sister, Skylar. Stetson's mom connected with Luka's mom over common symptoms and experiences, meeting first on an Facebook group for parents with children who have a primary immunodeficiency disease. Since then, the moms have been connected with a life long friendship of support and love -- helping each other never feel alone. Stetson's mom sends a goodie box; Luka's mom sends special healing cream -- both always looking out for each other.
We're Partnering with The Mighty!
The Luka The Lion Foundation is 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. The Mighty publishes real stories about real people facing real challenges.
Our Story: 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.
WHAT WE'RE READING | #RareDisaeses
SUPPORT | ALWAYS REMEMBER TO ROAR!
#Roar4Rare: Nurse Practitioner Hannah
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 Practitioners 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.
You are The Pride!
1. Need a #LukaTheLion Scarf 2.0? Order your scarves today! 100% of sales goes directly to the Foundation to advance our mission.
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.
3. How do you #Roar4Rare for kids with rare diseases? Tell us and you can 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. 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
How can you #Roar4Rare to help us support kids with rare diseases and their families?
For more about our story, visit: www.lukathelionfoundation.org