By: Sara Shiveler, Founder & Coordinator of Charleston Mom Prom
Rare Disease Day is coming up on Tuesday, February 28th. This is a day to bring awareness to over 7,000 rare diseases that impact over 300 million people globally.
A disease is considered rare if it impacts less than 1 in 2,000 people. However, as the mother of a child with one such rare disease, I can tell you that nothing seems rare when your child is given a chronic diagnosis, and your family is thrust into the daily ins and outs of life with a disease that has no cure. Something may seem rare and uncommon until it happens to you or a loved one.
Cystic fibrosis is a progressive, genetic disease that affects the lungs, pancreas, and other organs. In people with cystic fibrosis, a defective gene causes a thick buildup of mucus in the lungs, pancreas, and other organs. In the lungs, mucus clogs the airways and traps bacteria, leading to infections, extensive lung damage, and respiratory failure. Many people with CF do not benefit from existing therapies, either because their disease is too advanced or because their specific genetic mutations will not respond.
My son was diagnosed with CF at 10 days old, and since that diagnosis in 2010, I have been fighting to do my part to bring awareness and raise vital funds to help find a cure for the disease. One way I have done that is by putting the FUN into fundraising and hosting Charleston Mom Prom, a ladies’ night out where all proceeds benefit the Cystic Fibrosis Foundation. We recently held our 9th annual event on Saturday, February 4th and this epic ladies’ night with over 300 women decked out, dancing the night away raised over $45,000 to fuel advancements in research that will help improve the treatments and care available for those living with CF each and every day.
Taylor Lentz is another local CF Mom who refuses to let CF define her 6-year-old daughter. As a former pediatric nurse, she has seen firsthand the havoc this disease can cause. So, when she learned of her daughter’s CF diagnosis at age 4 in 2020, she knew she wanted to do her part to help fight for a cure. Taylor helped with Mom Prom in 2022, then hosted the inaugural CF Bites, an upscale Halloween couples costume party last October, and raised over $60,000 for the CFF.
Because CF is a rare disease, it receives little funding aside from that raised by private donors and foundations. The world’s leader in the search for a cure is the Cystic Fibrosis Foundation. Because of the CFF, tremendous advancements in specialized CF care have added years and improved the quality of life for people with cystic fibrosis. During the 1950s, a child with CF rarely lived long enough to attend elementary school. Today, many people with CF are achieving their dreams of attending college, pursuing careers, getting married, and having kids. Although there has been significant progress in treating this disease, there is still no cure, and too many lives are cut far too short.
This is why I refuse to let any chance go by when I can educate and raise awareness for my son’s rare disease, cystic fibrosis (CF). This is also why it’s vital that moms like myself and Taylor advocate and fundraise for this disease. The future looks so bright for our kiddos, but we will not stop until CF stands for Cure Found. We would love your support as we fight CF and do our part to end this rare disease. Here are a few ways you can be involved:
You can make a tax-deductible donation to the CFF here: https://passion.cff.org/chsmomprom2023/Donate
You can join us as we take ‘Great Strides’ to cure CF on Saturday, April 29th at Wannamaker Park by forming a team or registering to walk with us here: https://fightcf.cff.org/site/TR/GreatStrides/116_South_Carolina_Charleston?pg=entry&fr_id=9714
You can support our fundraising efforts by attending or sponsoring our events. Find out more at charlestonmomprom.org and instagram.com/charlestoncfbites
Find out more about the work of the CFF and get involved by visiting www.cff.org.
