My Great Strides Story
Shelby Luebbert
Shelby Luebbert
Welcome to my 2025 Walk page!
My name is Shelby Luebbert, and I am the team leader of GT’s Pit Crew. I was born with Cystic Fibrosis, and diagnosed at a year old with two of the more rare-er mutations when it comes to CF. Our team was formerly known as GT’s Mafia, but in order for the kiddos to be able to rock their gear at school… we morphed to GT’s Pit Crew in 2020. This also fits perfectly with our car-loving family, and my nickname of GT 500.
Cystic Fibrosis is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs due to a faulty gene within our DNA. The CFTR gene is a protein responsible for keeping the balance of salt and water within the body. When this is faulty, the ratio is off and either cannot produce the protein needed, or it is defective. At this time, there are over 2,800+ mutations known! This causes extra sticky mucus throughout the body, and research has been found to also show that CF can be found in every single cell, even our nervous system! This ongoing issue can cause life threatening infections throughout our respiratory and digestive systems, and even issues with fertility.
I have become a huge advocate within the CF world since becoming an adult, and this is yet another year to keep the fire going. I advocate for all of us within the CF community, and what is called the ‘final 10%.’ In recent years, gene modulators have come out for those who produce CFTR protein, but aren’t able to function normally. Further research in adding even more mutations has lowered the 10% down to around 6% these days! Those modulators help get that protein to the surface and work correctly. With one of my mutations, we are in a class of genes that do not produce that protein at all. The modulators cannot help those who don’t produce the protein… and therefore classified within the final 10% of people who cannot benefit from anything. Fortunately, I have been able to finally utilize the newest modulator since my second mutation produces a little bit of CFTR. With that said - it's not a fix all! I still struggle every day within what stability I have been able to gain.
My days and health have been a rollercoaster in my adulthood and include having to advocate that my life was worth saving, a g-tube being placed in 2015 for nutrition, switching my care to a different city and doctors to save my life, and being a voice to continue on for those in my life that have passed away from complications of CF. My fight is no where near over, and I am grateful for everyone who has been a part of my ‘Pit Crew’ lifting me up anytime I hit a speed bump.
Because of sitting on the sidelines for so long, along with becoming friends with others in the community, I am determined to shine a light on ALL of us within the community. CF comes in every race, social class, region of the world, and every single CF person’s journey is unique and different, even siblings! Helping research and advocacy on both the local and national level has helped fill my cup in so many ways… but it’s time to continue and kick it up a notch. We have so many things challenging others every single day throughout our country and world, and I want to extend my heart to be a voice for so many in my community that may not have the fire within them quite yet like I have gained. I'm only able to be this torch bearer because so many others in the past were that person for me. Because research has continued to help so many with CF. I would not be here if it weren't for other CF advocates in years past... Most of those said people have sadly passed away. I made a promise years ago with a couple of other CF women that whoever was left standing - would be the one to carry a light forward. I am that person.. and I'm continuing this every single day that I have the strength to keep going...
With over 2,800+ mutations, and that research helping to change not only newborn screening, but better detection and awareness for those who are older and late diagnosed - we are able to save more lives and help those who have rarer mutations.
We are also in the beginning stages of genetic therapies, which is incredibly exciting! This is something that can help EVERYONE with CF regardless of mutation class because it does not matter if the protein is produced or not… this goes down to a deeper level within our genetic makeup to produce the protein needed! These trials are only in Phase 1… so there is a long way to go on things, but it’s yet another building block to a potential cure. By fundraising, this truly helps move things forward either by funding more companies, or helping the science behind the trials already happening! In my 14 years of advocating at the CF walks and beyond... I’ve been able to see the change and progress even in this short amount of time. With that said, there are still people being born every day, and the chance of CF happening for those babies if their parents are carriers; along with those who are late diagnoses and have the burden of years of damage to their bodies. CF currently does not have a cure.
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Will you help lace up and fund a cure? Your donations are 100% tax deductible, and it truly means the world and beyond to me in any way you choose to support! That can be donating, sharing my story to your networks, getting GT’s gear that I sell, or even word of mouth to my social networks! Any little thing counts! I would love to help educate and advocate on the awareness needed to still such a lesser known condition.. with only around 40,000 in the US, and 150,000 nationwide diagnosed.
I’d love to have you join us on walk day the most, but purchasing gear for it to rock whenever also means so much even if you can't make it to the walk! It makes me so happy seeing everyone wear them out and about since it strikes up conversations wherever people go! Make sure to check out my Facebook event group or my personal page. You're also welcome to message me directly! Apparel will be sold around April!
So, join us May 17th if you can!
We will be walking in Carondelet Park
2900 Holly Hills Blvd. St. Louis, MO 63116
We will be there about 8:30 to set up the tent(s) debating just how many people are able to join us!
If you’re available – we’d love to have you help decorate!
The tent contest is always an exciting time!
Check-in begins at 9am & Walk begins about 9:45
I know parking will be difficult the closer to the walk you get!
We will try and do lunch again afterward there
– if you want to be a part of it all you are more than welcome! -
Your friends and dogs are also welcome to join the Pit Crew!
We will be walking in Carondelet Park
2900 Holly Hills Blvd. St. Louis, MO 63116
We will be there about 8:30 to set up the tent(s) debating just how many people are able to join us!
If you’re available – we’d love to have you help decorate!
The tent contest is always an exciting time!
Check-in begins at 9am & Walk begins about 9:45
I know parking will be difficult the closer to the walk you get!
We will try and do lunch again afterward there
– if you want to be a part of it all you are more than welcome! -
Your friends and dogs are also welcome to join the Pit Crew!
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