Hi everyone! And welcome to the page of GT’s Pit Crew!
We were formerly known as GT’s Mafia, but with the wanted change of making it more kid friendly (so they can rep their shirts at school!) and the addition of morphing to a virtual ‘rides’ edition in the past during the pandemic of our normal walk… we wanted to change things up at the perfect time! And not to mention… We should have probably done this from the beginning with how big of a car family we are!
For those that know me, and those just tuning in for the first time, our leader is me… Shelby Luebbert! We got the name from a friend of mine who referred to me as GT, or GT500 like the car, Shelby Mustang. I am a 31-year-old cf’er from Saint Louis, MO.
I was born with two of the rarer types of mutations when it comes to CF (There are now over 1,800 documented mutations!), and diagnosed right around my first birthday. My parents actually passed the carrier test but were in a ‘gray’ area they told them! Growing up, I was pretty healthy, but once I hit my late teen years into my 20’s… things took a huge turn for the worse. We finally found out the name of my second mutation right before my 20th birthday. Multitudes of hospitalizations have taken over my life this past decade, along with placement of a g-tube to help nutrition, lung function plummeting, the addition of autoimmune issues coming into play, and finally finding out celiac disease was having a hand in things as well. I was also evaluated for a lung transplant in July of 2020 to start getting on their radar since I have so many other components to my health, but thankfully we have found some things to stabilize me.
With that said, I want to highlight the stability I have been able to hold on to for the past couple of of years; and to be honest - It's solely due to so many who have helped donate over the years.
Because I have rare genes, clinical trials do not focus on testing my mutation combo when developing new medications and drugs (They always look at the genes that have a bigger population to affect). Because of this - I technically fall into the 'Final 5-10%' of CF patient mutation combos. BUT!! The CF Foundation has funded the Therapeutic's Lab in in Lexington, Massachusetts, where they obtain samples of those with rare mutation combos and test them against the new 'modulator' drugs like Kalydeco, Orkambi, Symdeko, and Trikafta - which is the newest installment.
On a whim, we sent my samples to test against Trikafta, thanks to my team at KU Med in Kansas City, to Cincinnati where they were running a study. After the testing, they would then 'bank' them in the Therapeutics Lab in Massachusetts to grow for the future. My cells responded at just 3%, but after having in depth talks with every doctor on the team out there, along with Cincinnati, we took the chance in late 2020. This has stabilized me just enough that we can give attention to other things going on in my body before we have to pursue a double lung transplant hopefully. Cinci docs are also following closely with my ongoing numbers, and other patients who have one of my mutations that it's responding to!
I truly would not be here if it wasn't for technology and science progressing for the better. And the CF Foundation utilizes its donations to help us in SO many ways. It's because of YOU, truly, and I don't say that in that cheesy cliche way.. I mean it. And I'm forever in debt to all that support me year after year.
I'm dedicating this year to those who left us too soon. . Along with those coming up the line with CF. The young ones will never have to see the pain we go through like so many of us did hopefully, and those that do - there are SO many more therapies to help them.
The pandemic has kept us cooped up for what feels like a lifetime, and a blink, all in one. It's been far too long since we have seen many of you.. We are a huge car family since my dad has restored cars basically all his life, and always have been in the family generations past… So, I invite you to come join our 'pit crew' as we continue this theme. Your support means more than you could ever know; it truly helps continue this fire that I have ignited within me.. and any way you can support (even by just sharing the page as I share it!) helps continue this much needed awareness that thousands so badly need!
Save the date: May 20th, 2022
We will be there about 9am! I will update closer to the event.
Where: Fenton City Park
1215 Larkin Williams Rd. Fenton, MO 63026
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I also want to add that:
I am planning to also attend the Metro East walk May 7th (at the beginning of the month), being held at the Watershed Nature Center in Edwardsville, IL in case you want to attend that one with us.
I cannot sign up jointly to it, BUT if you are interested, I plan to attend it with the young professional’s group within our CF Chapter; we will have a 'Tomorrow's Leaders' tent up.
You are welcome to join!
To learn more about Cystic Fibrosis, please visit: www.cff.org
To learn more about Celiac Disease, please visit: www.celiac.org
To learn more about my autoimmune components please visit: www.lupus.org
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, and friends who struggle every day just to breathe. I walk for them. I am SO happy to also announce that for the FIRST time in CF history, we have MORE adults than children with CF. It's solely due to the progress that has been made in research.
Will you join me and support my fundraising goal? Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure. We will not leave anyone behind. We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!
Your donation is 100% tax deductible!
Please support me, and a cure once and for all.
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Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
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