Florence Forth Road Race
Mar
4
7:30 AM07:30

Florence Forth Road Race

Register | Team #LukaTheLion/Lakewood

Join us in honor's Luka's 3rd birthday in heaven, Florence, and kids born with rare diseases as we "March Forth" as The Pride with the Lakewood community. 

You can run or walk a 5K or 10K, cheer us on from the sidelines, visit the after-party kids area for the "cape race," or walk/run/bike wherever you are in the world! Registered members of Team #LukaTheLion/Lakewood will be honored with a special cape. 

To register: http://florenceforth.org/ (be sure to select group/team #LukaTheLion/Lakewood 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. It's rare to be this close to rare - ROAR!

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Spaghetti Potluck Dinner
Mar
3
5:30 PM17:30

Spaghetti Potluck Dinner

Food & Fellowship | See you there

Let's gather in fellowship to honor Luka's 3rd birthday in heaven, continue to March Forth, and thank The Pride of the Luka The Lion Foundation for all their support of kids with rare diseases and their families.

We'll enjoy Luka's favorite food and carb up as we prepare to run/walk the Florence Forth Road Race the next morning. Join our team #LukaTheLion/Lakewood. 

Bring a small dish for the potluck or a gift for a kid at the hospital -- to carry on Luka's legacy of sharing. Spaghetti will be provided! (Options include: meat, kosher, veggie/vegan)

RSVP | Thank you, ROAR!

Name *
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Event Location | Oak Church (2100 Chapel Hill Rd, Durham, NC 27707)

The church directly across the street from the Lakewood YMCA. 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 will gather in the basement of the church. 

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Apr
30
7:00 AM07:00

The Great Human Race 5K

Join us! Register to run or walk this 5K to support our non-profit organization, the Luka The Lion Foundation. 

Be sure to use the PROMO code LukasGHR so that $5 from your registration goes directly to the Luka The Lion Foundation -- and, join our team by selecting #LukaTheLion

To register: http://greathumanrace.itsyourrace.com/event.aspx?id=5017

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. 

To become a fundraiser for Luka The Lion Foundation, make an online donation, or ask your friends and families to be The Pride: https://thevolunteercenter.givebig.org/c/TBR/a/lukathelionfoundation

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Apr
29
8:00 AM08:00

#UndiagnosedDay

Initiated by Syndromes Without A Name (SWAN) and galvanized by the Rare and Undiagnosed Network (RUN)'s Undiagnosed Alliance for which the Luka The Lion Foundation is a proud member, Undiagnosed Day raises awareness among the general public and decision-makers about undiagnosed diseases and their emotional, physical, and financial impact on the lives of the patients and their families. Since 80% of rare and undiagnosed diseases have genetic origins, it is imperative to raise awareness for the importance of genetics in the diagnostic odyssey of undiagnosed patients. 

  • Do you know someone who is undiagnosed and doesn't have access to insurance and/or resources for whole exome sequencing? Click here to explore the SWAN application (completed by a physician) and submit by April 29th for this opportunity. 
  • For more information about national resources for the undiagnosed disease community, check out Harvard's Undiagnosed Diseases Network funded by the NIH.  
  • For 11 things we learned, read the Luka The Lion Foundation's article, "To the Parents of a Child Waiting for a Diagnosis" by Founder, Julia Fisher, as published on The Mighty. 
  • To read Our Rare + Undiagnosed Story: click here
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Apr
22
to Apr 29

World PI Week

World PI Week is a global campaign which aims to raise awareness and improve diagnosis and treatment of primary immunodeficiencies (PI). To celebrate, you can check out the website to see our Luka The Lion highlighted as a patient story, and so many other important patient stories. On the website, you can also learn PI facts, sign the awareness petition, browse events or download resources.

Our Undiagnosed PI Story

Although Luka's rare disease doesn't have it's own name (yet), his undiagnosed disease is under an umbrella of 250+ conditions called "primary immunodeficiency diseases," or PI, which means that part(s) of the immune system is missing and/or does not function properly. Some patients have low B cells and need monthly infusions of immunoglobulins to fight common infections. But, in Luka's case, and for patients born with Severe Combined Immunodeficiency Disease (SCID), these are the most extreme examples of a PI disease. Without the hope of a bone marrow transplant or experimental gene therapy, kids born with SCID or rare SCID-like diseases usually have a life span of one year. Click here to read more about SCID, sometimes known as the "bubble boy" disease in honor of David Vetter

Often Undiagnosed

PI diseases aren't always straightforward and are often difficult to diagnose. According to World PI Week, 70-90% of patients who have a PI are undiagnosed, meaning either (1) their symptoms do not fit into a classic diagnosis, (2) doctors are not able to identify a diagnosis, and/or (3) the patient/family isn't aware of the condition yet. Unfortunately, when you are undiagnosed it's easy to fall through gaps in the healthcare system and feel alienated not only from society, but even the medical community. Kids and families who face these rare, undiagnosed PI diseases are in even more need for someone -- a doctor, nurse, social worker, therapist, volunteer --  to hold their hands, ask questions, and listen so that they never feel alone. 

Think Zebra

From our friends at the Immune Deficiency Foundation (IDF), the PI community often identifies with zebras. This is based on an old saying. In medical school, many doctors learn the saying, "when you hear hoof beats, think horses, not zebras" and are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes physicians need to look for a zebra. Patients with PI are the zebras of the medical world. So IDF says #THINKZEBRA!

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Apr
14
8:00 AM08:00

Platelet Party

  • 101 Manning Drive Chapel Hill, NC, 27514 United States (map)
  • Google Calendar ICS

Bring a friend and make a appointment that could help save a life! The process takes about 1-2 hours and is a lot of fun. 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! 

Time available:
8:30am - 3 chairs
10:30am - 4 chairs
12:30pm - 2 chairs
2:30pm - 2 chairs
4:30pm - 2 chairs

To register: Contact Julia Fisher via message, post below, or email at juliaconradfisher@gmail.com and mention your preferred time slot. 

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:https://www.youtube.com/watch?v=L9AYFIpCtVc

Note: Please DRINK PLENTY OF WATER and AVOID ASPIRIN for 48 hours prior to donating. You'll also need to be cold/flu free for 72 hours prior to, and answer some screening questions. We thank you for giving!

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Match Madness: Be The Match Bone Marrow Registry Drive
Mar
19
11:00 AM11:00

Match Madness: Be The Match Bone Marrow Registry Drive

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.

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@lukathelionfoundation.org. I'll be there from 12:30-2:30 pm. 

2. Register to be on the bone marrow registry by stopping by! The process takes about 5-15 minutes -- you fill out a questionaire, 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. 

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. 

To learn more, including Q&A about bone marrow donation:
http://abc11.com/health/abc11-match-madness/1196702/

To request a Be The Match registration packet to be sent to your home: 
https://bethematch.org/support-the-cause/donate-bone-marrow/join-the-marrow-registry/

To read my essay to Luka's bone marrow donor :http://themighty.com/2015/11/to-the-anonymous-donor-who-saved-our-s0n-by-giving-a-piece-of-herself/

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Mar
3
8:30 AM08:30

Platelet Party

  • 101 Manning Drive Chapel Hill, NC, 27514 United States (map)
  • Google Calendar ICS

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 as there are 4 infusion chairs in the area). You have access to free drinks and snacks, as well as, movies, magaines, 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!

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!

To register (or contact Julia who has reserved some spaces for 10 am):https://www.genbook.com/bookings/slot/reservation/30017895

Interested in learning what the process is like? Watch this great video:https://www.youtube.com/watch?v=L9AYFIpCtVc

Note: Please DRINK PLENTY OF WATER and AVOID ASPIRIN for 48 hours prior to donating. You'll also need to be cold/flu free for 72 hours prior to, and answer some screening questions. We thank you for giving!

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Feb
29
8:30 AM08:30

World Rare Disease Day

February 29, 2016 is the rarest day of the year! It's also World Rare Disease Day.

Join us and support kids and families with rare diseases by wearing blue jeans or a Global Genes Ribbon to show that you care. If you'd like a Ribbon, make a comment in this post (or send a direct message with your address) and we'll try our best to get you one in time. 

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? For more facts: https://globalgenes.org/

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. 

For ideas on how to talk about rare genetic disease with kids: http://lukathelionfoundation.org/2016/02/05/world-rare-disease-day-february-29-2016/

As always, feel free to share your ideas within this post on ways that we can all spread awareness of rare genetic diseases.

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