We have arrived.
As of January 28, 2016, the Luka The Lion Foundation is officially incorporated in the state of North Carolina. Our mission is big, yet simple: raise awareness of pediatric rare diseases and support patients and families so that nobody ever feels alone.
We're looking forward to officially establishing the Luka The Lion Foundation as a 501(c)(3) non-profit educational and charitable organization. We're excited to move forward in the process by recently establishing the Board of Directors, by-laws, and all the necessary organizing documents. Today, we formally applied for tax-exempt status from the IRS.
We couldn't do this without you. You are The Pride. Kids with rare diseases and their families thank you. We're excited to share some exciting news and upcoming events with you in this first edition of the Circle of Love, a monthly newsletter.
"Why I'm a Bandwagon Carolina Panthers Fan (Yes, I'm One For Good Reason)"
The #LukaTheLion #ScarfChallenge, supported by Carolina Panthers' Greg Olsen, goes viral thanks to TheMighty.com. We're proud to be on the bandwagon and raise awareness for the Luka The Lion Foundation, as well as, Greg's Foundation, Receptions for Research, that enhances the lives of kids and families with cardiovascular disease, cancer, and other diseases. No matter what happened in Super Bowl 50, Olsen is always a winner in our hearts.
Is Lincoln Earliest Recorded Case of Rare Disease?
In honor of President's Day and our family's Springfield, IL roots, let's learn from the Washington Post about Abraham Lincoln and how he may have had a rare genetic disease. He truly was the rarest of men.
World Rare Disease Day
February 29, 2016 is the rarest day of the year! Join us and support kids and families with rare diseases by wearing blue jeans or a Global Genes Ribbon to show that you care. Did you know that 1 in 10 people in the U.S. have a rare disease, and 80% of these people are kids? Or that there are over 7,000 rare diseases, yet, many diseases are so small in population, there are only 15% of these rare diseases that even have a foundation to support their unique needs?
This year, we are partnering with a Durham Public School, Morehead Montessori Magnet School, and the PTA to talk about rare genetic diseases, share Global Genes Ribbons, encourage everyone to wear blue jeans in honor of Luka and all kids and families who fight rare diseases so they don't feel alone. We're also looking at ways to be creative to show grace and courtesy by writing stories, drawing pictures, and making cards for kids in the hospital. Click here to learn more.
"Beyond the Diagnosis Art Exhibit" by Rare Disease United Foundation
Luka has been invited to be a part of the "Rare Angels" section of the art exhibit that raises awareness for kids with rare diseases, particularly to encourage people to look "beyond the diagnosis." The exhibit travels around medical schools, research institutes, and hospitals around the country in hopes that by raising awareness through art, the exhibit can help reduce diagnosis time (average of 8 years), improve care, and create a more engaged process with patients and their families. We're honored that Luka's story and radiant soul will be a part of this artistic expression. Keep a look out for CBS Sunday Morning that will air a segment on this exhibit sometime this February.
Be The Match Swab Kit Assembly Day
Sunday, February 21, 2016 1:00 pm
Lakewood YMCA 2119 Chapel Hill Rd in Durham
Stop by and you could assemble the kit that's used to find a match to help potentially cure a patient with a life-threatening condition. You could #BeTheCupid! For more information about this event or volunteer opportunities at the YMCA, please contact Zach at firstname.lastname@example.org.
Interested in swabbing yourself to see if you are a match? Click here to request a kit from Be The Match that will be mailed directly to your home, or see how you can help out in another way.
Thursday, March 3, 2016 from 8:00 am - 12:00 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 (we've just blocked off a 4 hour time slot and there are 4 infusion chairs in the area). 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. If we fill up all 4 chairs, we even get free pizza! You can register by clicking here, or contact Julia at email@example.com, as we have some registration spaces reserved for our group at 10 am.
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 important to know that UNC doesn't pay for platelet donation, nor do they sell your platelets. If you are in another area, you can look into your local hospital to see if they have this particular need, or see if donating your blood (red blood cells) is a possibility. Or, spread the word as awareness is everything! Interested in learning what the process is like? Watch this great video featuring UNC students and leaders.s
Spaghetti Dinner for the Luka The Lion Foundation
Friday, March 4, 2016 from 6:00-7:30 pm
Oak Church, 2100 Chapel Hill Rd in Durham
To get ready for the Florence Forth Road Race the following morning, we'll gather for a spaghetti potluck dinner and share updates on the Luka The Lion Foundation. We'll provide the spaghetti, sauce, and bottled water. Feel free to bring a dish of your choice to share (small portions are welcome): salad, veggies, bread, fruit, or a light dessert. This is Luka's would-be second birthday, and it's so very fitting that we will be carbing up on spaghetti since that boy loved to eat, and this was his favorite meal!
The event will be held at the church directly across the street from the Lakewood YMCA and is generously hosed by Oak Church. You can park behind the church on the side street or in the YMCA lot. Keep in mind that the sign outside the church says "Lakewood Baptist Church" -- it's a physical space that houses many faith communities. We'll try to have some "#LukaTheLion scarves out to help with getting folks where they need to be. The gathering room where we will be is in the basement of the Church. For more information, please contact Zach at firstname.lastname@example.org
Florence Forth 5K/10K
Saturday, March 5, 2016 8:00 am
Ninth Street (700 Block) in Durham
We're already #4 in the largest team category, let's see if we can get to #1! In honor of what would-be Luka's 2nd birthday, join team #LukaTheLion to honor Luka, Florence, and kids born with rare diseases as we "March Forth" as a lion's pride circle of love. Register to join us for the official 5K walk/run or 10K rooad race, cheer us on from the sidelines, visit the after-party kids area for the "cape race," or run, walk, or bike wherever you are in the world -- be sure to send in photos of support!
To register, go to www.florenceforth.org and be sure to select group/team #LukaTheLion in the drop-down menu). Proceeds to the Florence Forth Road Race go to the Autoimmune Encephalitis Alliance, which is a disease similar to the umbrella of diseases that affected our lion. We are humbled and grateful that the Durham YMCA has shared this important event with members and are excited to run with our extended #LukaTheLion Pride!
Booster T-Shirt Update
The #LukaTheLion T-Shirts have arrived! Thanks to all who purchased a T-Shirt and donated to the Foundation through the booster fundraiser. We raised $490 for the cause, selling 44 t-shirts. For those who shipped to the bulk address, we can distribute either at the Spaghetti Dinner, or earlier if you prefer (contact Zach at email@example.com for a head's up).
Didn't order a t-shirt in time? No worries, although this Booster campaign is closed, we can open it again in the future.
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.
We can roar by making a difference in someone's life through an intentional act of kindness as a reminder that they aren't alone. Donating your platelets, hair, a small gift bag, money for a funeral -- it goes a long way to help kids and families feel like they are a part of something positive, and that they are never alone.
We're honored and humbled to share that we've raised a little over $16,000 in two months to support the Luka The Lion Foundation through the gofundme website, booster t-shirt sales, the beautiful lion watercolor artwork, and generous contributions received by mail. We thank you, The Pride, for making this possible. Every dollar makes a difference, and so does every note, card, comment, act of love and support. We appreciate you.
Julia and Zach Fisher on behalf of the Luka The Lion Foundation Board of Directors: Emily Gelblum, Kristen Southworth, Francesca Paris-Albertson, Erin Murninghan, Taylor Rippy and Kristen Register Lakis
For more about our story, visit: www.lukathelionfoundation.org