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The Circle of Love, a monthly newsletter for The Pride: 
How We Roar!, Big Give: Online Donations, A Nurse's Gift, Vote, Charity Miles, Match Madness, Carolina For Kids UNC Dance Marathon, Platelet Party, The Great Human Race, Donor Spotlight
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Luka The Lion Foundation

Circle of Love, March 2016

How We Roar!

In less than two months, the Luka The Lion Foundation is now officially established as a 501(c)(3) non-profit organization to raise awareness for pediatric rare diseases and support patients and families so nobody ever feels alone. We've been busy in the last two months: 
  • 3 kids with rare diseases and their families received individualized support ranging from busy bags to a new experience to assistance for funeral costs. 
  • 13 volunteers, ranging in age span of over 70 years, assembled 500 Be The Match swab and registration kits at the Lakewood YMCA in Durham so that 500 people are closing to finding their cure to a life-threatening disease, all in just 3 hours on February 21, 2016.
  • 400 PreK-5th grade students at Morehead Montessori Magnet School in Durham Public Schools, in partnership with the school PTA, received educational materials for Talking with Kids About Rare Diseases and were invited to "Rock Blue Jeans" and a Global Genes Ribbon to support Rare Disease Day on February 29, 2016
  • 45 students in the 4-5th grade upper elementary classes participated in learning about a rare liver disease and how a friend helped another friend by writing a book to raise over $1M for research to find a cure for this rare disease with So Chocolate Bar
  • 8 volunteers donated their platelets at UNC Blood Collection Center so that 8+ patients at UNC can receive a potentially life-saving measure on March 3, 2016.
  • 30 people in the Lion's Pride gathered to celebrate Luka, the Foundation, and eat his favorite food -- Spaghetti -- to prepare for the next day's race thanks our host, The Oak Church on March 4, 2016. 
  • 20 brave souls crossed the finish line on Team #LukaTheLion to run and walk the Florence Forth to support the Autoimmune Encephalitis Alliance in honor of Luka, Florence, and all our angels and survivors on March 5, 2016.
  • #LukaTheLion Scarf Challenges:
    • The Lion King -- thanks to the Durham YMCA
    • The White House -- thanks to Rep. David Price's Office
    • #SheBelieves Cup -- thanks to the #USWNT
    • Rare Disease Day at the NIH -- thanks to Babcia
    • Florence Forth -- thanks to Team #LukaTheLion
    • Rock N Roll Marathon -- thanks to runner Megan Grimaldi
    • Tobacco Road Marathon -- thanks to runner Allison Bashor and the ABC11 team
    • Nickelodeon Studios -- thanks to board member and nurse Taylor Rippy
  • Learned from partner organizations including Dean Thomas Moinet Foundation, The Bee Hive Collective, Third Space Studios, and Assel Consulting.
How do you roar? Email us

AWARENESS

How To Make An Online Tax-Deductible Donation:The Big Give of The Volunteer Center of Durham
Our online donation portal is up a running! Big thanks to the The Volunteer Center of Durham for hosting this online portal -- we are honored to be an official triangle non-profit organization that is part of this big give. Through this website, you can make a one-time or reoccurring payment and, of course, all donations are tax-deductible.
  • For $8, you can provide parking for one day for a family at the clinic or hospital.
  • For $30, you can provide a family meal through a local restaurant.
  • For $75 you can provide individualized support for a patient and family fighting a rare disease.
  • For $100 you can provide funding for specialized research supporting pediatric rare diseases.
For more information on how you can March Forth and make a donation with a mail in check:click here.

The Gift From My Son's Nurse During My Greatest Time of Need
"There are no coincidences in life. People bring us gifts that we never could imagine, yet change our lives. For us, it’s this gift of knowing that the love beyond our lion painting is eternal. Since I’ll never have enough words to express it – thank you, Bren, for your painting worth more than a thousand words." For the full story featured on The Mighty: click here. 

You, too, can experience the Luka The Lion painting to remember that there are “no coincidences.” Bren is so graciously donating 100% of proceeds from the purchase of these prints to the Luka The Lion Foundation that we started to honor Luka’s spirit to raise awareness for rare diseases and help patients and their families so they never feel alone. The beauty lives on through this gorgeous wa
tercolor.


To purchase your print of Luka The Lion by Bren Sparling: 
http://fineartamerica.com/featured/luka-the-lion-bren-sparling.html


VOTE!
We need your help! With your nomination, the Luka The Lion Foundation could be featured on the Booster website and raise much needed awareness and funding to help us achieve our mission to help kids with rare diseases. 

Click here to nominate a non-profit or charity that benefits kids to be our featured cause of the month. All you need is: 1. Name: Luka The Lion Foundation 2. Website: www.lukathelionfoundation.org 3. EIN # 81-1247775 4. To raise awareness for pediatric rare diseases and support patients and their families so nobody ever feels alone. 5. Point of contact: Julia Fisher 6. Phone: 252-452-2254

 


Run for a Cause: Charity Miles
Download the app, join team #LukaTheLion, and select a charity to donate $0.25 for ever mile walked, run, or biked. We're in the process of applying to be a charity to benefit, but in the meantime you can join our team to support causes that help kids ranging from St. Jude's to Save the Children and so many more. The more miles we run, walk, or bike as Team #LukaTheLion -- the better chances we have to join this amazing platform!

SUPPORT

Match Madness Be The Match Registry Drive
Saturday, March 19, 2016 11:00 am - 2:00 pm
Southpoint Mall 6910 Fayetteville St. in Durham

Join ABC11, Radio One and Univision 40 for the annual ABC11 Together Match Madness - Bone Marrow Donor Registration Drive. The Match Madness campaign is a partnership with Be The Match whose mission is to provide hope for a cure by connecting patients with life-saving marrow donors.

If it weren't for an anonymous bone marrow donor, Luka wouldn't have had a chance at a cure and we are forever grateful for this gift. We know several patients who are waiting for their match -- or the wait was too long. Unfortunately, patients from ethnic backgrounds (African American, Hispanic, Asian and Native American), have the lowest odds of finding a match compared to other populations. Patients are most likely to match someone who shares their ancestry. Spreading the word, especially to diverse ethnic populations and communities can truly save lives. Click here to read Julia's thank you to Luka's anonymous bone marrow donor featured on The Mighty, and share our story to inspire others.


How can you get involved? 
1. Volunteer at the event to help Be The Match representatives with logistics. If you're interested, please contact Julia via email at juliaconradfisher@gmail.com.

2. Register to be on the bone marrow registry by stopping by! The process takes about 5-15 minutes -- you fill out a questionnaire, swab your cheeks, and can ask questions to experts should you have any. 

3. Spread the word! Not everyone can donate for various reasons (myself included), but everyone can tell someone else about Be The Match and the importance of donating your bone marrow to someone in need. 

More info: 
Q&A about bone marrow donation: click here
Request a Be The Match registration packet to be sent to your home: click here

Carolina For The Kids: UNC Dance Marathon
April 1-2, 2016
Fetzer Gym at UNC Chapel Hill 


Carolina For The Kids (FTK) North Carolina's largest student-run nonprofit that raises money for the For the Kids Fund that provides support for the patients and families of UNC Children's Hospital. Last year, FTK raised over $570,000. Throughout the school year and at the Marathon itself, the members of the organization work to make the lives of the families at UNC Children's a little easier. For more information: http://www.carolinaftk.org

This year, Maia is a Kid Co-Captain for Dance Marathon! KCC's serve as a reminder to all the dancers why they are standing for 24 hours-- and why this is so important. At the Marathon event, towards the last couple hours, we invite the families and KCCs to come and share their stories. The KCCs come to cheer on the dancers, participate in the activities we have planned, and of course, DANCE! 

Platelet Party!
Thursday, April 14, 2016 from 8:30 am - 4:30 pm
UNC Blood Donation Center, 3rd Floor NC Cancer Hospital 101 Manning Dr in Chapel Hill 

Make a appointment that could help save a life! The process takes about 1-2 hours and you have access to free drinks and snacks, as well as, movies, magazines, a great view, and super sweet nurses. Bring a book, put your feel up, and relax -- it's that easy. You can register by contacting Julia at juliaconradfisher@gmail.com and let her know what time works best for you, as we have spaces reserved throughout the day.

Within 5 days of your donation, your platelets will be given to a cancer patient, burn or trauma victim, premature baby or one of the many others with life-threatening medical conditions receiving care at UNC Hospitals -- it's true. One of Luka's former nurses let us know that she gave a patient platelets soon after we donated as a group last month, and given the date of donation -- it most likely was a member of our group. Truly, a gift that keeps on giving.  

 

The Great Human Race
Saturday, April 30, 2016 8:30 am
Durham Bulls Athletic Park 


Click here to register to run or walk this 5K around beautiful Durham Bulls Athletic Park, downtown, and the Forest Hills neighborhood. Be sure to use PROMO code LukasGHR so that $5 from your registration goes directly to the Luka The Lion Foundation -- and, join our team by selecting #LukaTheLion.  

You can also become a fundraiser through the online donation page if you're interested in asking others to support The Pride -- all proceeds will go directly to raising awareness for pediatric rare diseases and supporting patients and families so they never feel alone. 


ALWAYS REMEMBER TO ROAR!

Sometimes a roar can be loud. Sometimes a roar can be soft. Sometimes a roar can be silent. But what we can do is to always remember to roar.

Donor Spotlight: The Rock Shop
We love Durham and all our local businesses, but we really love The Rock Shop. Not only do they have baby chicks for spring time and all your landscaping needs, but they are also a family-run business full with big hearts. We can't thank you enough for how you roar to help kids with rare diseases and their families. 

Do you or someone you know have big hearts and a business interested in roaring?
Click here for how you can host a roar to benefit the Luka The Lion Foundation, or contact Julia at juliaconradfisher@gmail.com.

Whether it is a tax-deductible donation from The Rock Shop, 100% proceeds from the sales of a watercolor print, display a poster encouraging runners to register for The Great Human Race using PROMO LukasGHR, or <insert your idea here> -- we need you to roar so kids with rare disease and their families never feel alone. 


With big hearts,
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 

All donations are tax-deductible (EIN is 81-1247775). You can donate online, or make a check out to "Luka The Lion Foundation" and hand deliver or mail to: 

Luka The Lion Foundation
1521 Valley Run 
Durham, NC 27707

 
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