SHELBYVILLE, IL- On Saturday, September 29, the Shelby County Cystic Fibrosis Event held its seventh fundraiser. Those affected by cystic fibrosis (CF), family members, volunteers and supporters of all ages came together to raise funds to change CF from cystic fibrosis to cure found. The initial tally of funds comes to $12,764 but funds are still coming in for the cause.
Children mounted bikes and raced around the circle during Abbie’s Ride to see who could get the most laps in before the close of the event while the little tikes enjoyed the trike-a-thon part of Abbie’s Ride.
Adults, some with baby carriages and children walked the beautiful trails for Meliah’s Mile. Meliah’s Mile was named for Meliah Miller who lost her battle with CF at the age of 24. Her sister, Angel volunteered to pass out water to the walkers at the event.
At eight-months-old, the smallest child at Saturday’s event affected by CF was Will Anderson. Will is the son of Craig Anderson and HSHS St. Francis Hospital colleague Ally Anderson, CRNA. She previously worked in the cardiothoracic intensive care unit at Barnes Jewish Hospital in St. Louis.
“Will was healthy except he wasn’t gaining weight. When he was diagnosed with CF, the double-lung transplant patients I saw at Barnes were the first thing I thought of. It was difficult to hear that diagnosis,” Ally said.
She said, “Then I stepped back and took another look. I saw my healthy baby and thought of all the advances in medications and treatments. Then I thought his body doesn’t have those blockages yet. And with the advances, he may not have to deal with that. I also thanked God that my professional path had been designed to take care of this special little boy.”
Will takes about 30 pills a day, including enzyme pills, before each feeding to aid in his digestion. He also takes medication for acid reflux. His family does the manual pounding on his back to loosen the phlegm caused by CF. He is not in daycare because that could elevate his exposure to RSV, colds and flu which could be particularly dangerous to an infant with CF. But with the new medications as part of his daily routine, his mother says they have already seen a 40% increase in his weight.
The oldest person affected by CF was Abbie Pancoast Vollmar. When Abbie was born to Bob and Lana Pancoast, they were told to not get too attached because they wouldn’t have her for long. This became all the incentive they needed to learn what they could do to help their daughter. They were dutiful with her medication and doctor’s and started a bike-a-thon fundraiser for the Cystic Fibrosis Foundation. Children looked forward for months for the chance to come and ride their bikes with donors promising a dollar or ten for each mile.
For the last seven years, that bike-a-thon was revived and has been renamed Abbie’s Ride. Abbie said, “As we've started to raise awareness about the upcoming Cystic Fibrosis fundraising events in Shelby County on social media and other news outlets, I have heard from several of my friends who are so excited and a bit sentimental that many years later, the bike-a-thon is still happening in Shelbyville. This event was something we looked forward to as children and love that it’s something our children can look forward to and participate in today. My family and others who have been directly impacted by CF in Shelby County have always been grateful to so many families and so many generations of CF fundraisers for the past 30 plus years.”
She continued, “Until recently, the treatments for CF have essentially been Bandaids®, managing the symptoms of CF but not correcting the underlying problem. In 2012, the development of Kalydeco began to change the landscape of CF. Kalydeco helped a very small portion of those with CF, but that began to unlock the mystery of CF to scientists and led to the development of compounds in clinical trials today that will help nearly 90% of the CF population.
“But we aren't there yet and we won't stop until there is a cure for everyone. We need people, like this community, to help us cross the finish line. I am honored to be Lily and Reagan's mother, but I want to watch them graduate, be a part of their weddings and grow old with my husband. And there are still many others with CF who aren't as lucky as I have been, to hit any one of the milestones I have been able to.
“Scientists are seeing significant positive changes in the early phases of the clinical trials for these compounds. The hope is to move these drugs through clinical trials quickly, so they can become accessible for all of those with CF who may benefit from them. One of the most important jobs I've had to date is participating in various research trials that are supported by the Cystic Fibrosis Foundation.
“Thank you to the committee who has worked hard all year to make this event come to fruition. And thank you all of those who have spent so much of your time and treasure to get us this much closer to the finish line,” Abbie said. “I'm so proud to call Shelbyville my hometown.”
The event was sponsored by the First Federal Savings Association of Central Illinois and Loan and HSHS Good Shepherd Hospital. If you missed the event but would still like to make a donation there is still time. Please make your check out to the Cystic Fibrosis Foundation and mail it to the First Federal Savings and Loan, 200 N. Morgan in Shelbyville.
About HSHS Good Shepherd Hospital
Since its inception in 1916, HSHS Good Shepherd Hospital in Shelbyville (GSS) has been dedicated to excellence in healthcare for those living and visiting their communities. GSS has accomplished this by providing comprehensive health services and meeting the needs of patients served through their compassionate care, business integrity and community responsibility. GSS provides a 24/7 emergency department that is fully staffed by physicians and highly-trained nurses, and also features inpatient and outpatient services, including a 24-hour laboratory and an imaging department that meets today’s highest standards for diagnostic imaging technology. GSS has an advanced surgery department and an acute inpatient care unit. Dedicated to being a hometown hospital, GSS’ home health and rehabilitation departments are committed to excellence with a team of professional nurses and therapists providing a variety of medical services and rehabilitative therapies, all designed to help patients heal in their own environment. The group of visiting specialists in the outpatient clinic works closely with GSS to help keep the healthcare services local even if a specialized procedure or exam is required. GSS strives to be the first choice for the community’s healthcare needs. For more information about HSHS Good Shepherd Hospital, visit www.hshsgoodshepherd.org.
About Hospital Sisters Health System
Hospital Sisters Health System’s (HSHS) mission is to reveal and embody Christ’s healing love for all people through our high quality Franciscan health care ministry. HSHS provides state-of-the-art health care to our patients and is dedicated to serving all people, especially the most vulnerable, at each of our 15 local systems and physician practices in Illinois (Breese, Decatur, Effingham, Greenville, Highland, Litchfield, O’Fallon, Shelbyville and Springfield) and Wisconsin (Chippewa Falls, Eau Claire, Oconto Falls, Sheboygan and two in Green Bay). HSHS is sponsored by Hospital Sisters Ministries, and Hospital Sisters of St. Francis is the founding institute. For more information about HSHS, visit www.hshs.org. For more information about Hospital Sisters of St. Francis, visit www.hospitalsisters.org.