In our first two quarter of operation (January 28 - July 31, 2016), the Luka The Lion Foundation has achieved the following results to advance our mission of raising awareness for pediatric rare diseases and supporting patients and their families so nobody every feels alone. 


  • Determined the mission statement and formalized a Board of Directors through organizing documents including by-laws and other required documentation, including planning for the May 22, 2016 board meeting charged to "narrow the focus." 
  • Incorporated in the state of North Carolina as a charitable and education non-profit organization on January 28, 2016, established Employer Identification Number (81-1247775), and received official 501(c)(3) status effective January 28, 2016 from a letter dated February 24, 2016 (DLN tax exempt number: 26053449001686).
  • Established a bank account for Luka The Lion Foundation at Self-Help Credit Union in Durham, NC.
  • Developed communications materials:, Facebook page, Facebook group for The Pridee-news, and google apps for nonprofits email, 
  • Met with representatives from organizations to begin a needs assessment including: Dean Thomas Moinet Foundation, Assel Consulting, Bee Hive Collective, Morehead PTA, Third Space Studios, Be The Match, Be Loud! Sophie Foundation, Oak Foundation, UNC Health Care, NC Rare Disease Institute, Global Genes Foundation Alliance, and Undiagnosed Alliance wtih Rare and Undiagnosed Network (RUN). 
  • Participated in the Individual Donor Benchmark Survery from Third Space Studio and found that during the December 2015-March 2016 gofundme and mail in campaign to crowd source the Luka The Lion Foundation, we received donations from 193 individuals.
  • Raised $28,220 through gofundme, individual contributions, business sponsorships, and foundation grants. 


  • Co-hosted a volunteer event at the YMCA to assemble Be The Match swab and registration kits that will be used at donor drives to match a potential cure with someone who has a life-threatening disease. A total of 13 volunteers over 3 hours assembled 500 kits on February 21, 2016. 
  • Volunteered at the Be The Match bone marow registry drive, Match Madness, sponsored by ABC11 on March 19, 2016 and participated in raising awareness for rare diseases through participation in ABC11's news story. The event recruited hundreds of people to join the national bone marrow registry. 
  • Partnered with the Morehead Montessori Magnet School in Durham Public Schools and the Parent-Teacher Association to celebrate World RARE Disease Day on February 29, 2016. Distributed 500 Global Genes Ribbons, encouraged students and teacher to ROCK blue jeans to show you care, and provided education outreach to the primary and upper elementary classrooms (60 students total). Outreach included reading books, news articles, and brainstorming ideas to show you care about someone rare.
  • Hosted “Platelet Party” on March 3, 2016 and April 14, 2016 at the UNC Blood Donation Center where 9 people donated their platelets to help provide life-saving treatment to patients in need at UNC Hospital.
  • Organized 20 people to run/walk for Team #LukaTheLion at the Florence Forth 5K/10K on March 5, 2016 to raise awareness and funds for the Autoimmune Encephalitis Alliance.
  • Ran, walked, or Zumba'ed a total of 103 miles during April 2016 in honor of National Primary Immunodeficiency Awareness Month and to prepare for The Great Human Race 5k, a fundraiser event benefiting the Luka The Lion Foundation. Thanks to for tracking our progress and uniting Team #LukaTheLion to benefit the Leukemia and Lymphoma Society for each mile along the way.
  • Organized 9 people to run/walk for Team #LukaTheLion at The Great Human Race on April 30, 2016 to raise awareness for the Luka The Lion Foundation at the race's Non-Profit Marketplace and participate in the fundraising campaign, raising $740 in contributions to supporting kids with rare disease and their families. 
  • Published two articles on The Mighty, a national media outlet, highlighting the Luka The Lion Foundation.


  • Provided unique, individualized resources to 11 kids and families affiliated UNC Pediatric Hematology-Oncology and the rare disease community including tickets to a performing arts show, activity “busy” bags for clinic visits and recovery, funds for memorial service, specialized cream for side effects, a spa session, emergency meal, temporary housing solution, academic scholarship, school supplies, and more.
  • In partnership with Oak Church, hosted a Spaghetti Dinner for 30 participants on March 4, 2016 to honor Luka’s would-be 2nd birthday and share updates with The Pride of the Luka The Lion Foundation.