The Shops at the Riverwoods is providing s’more fun this holiday season by partnering with the Primary Ciliary Dyskinesia Foundation. Together the groups are selling s’more supplies on Friday and Saturday night to raise awareness and raise funds for the rare disease.
Primary ciliary dyskinesia is a disease that affects the cilia that lines the airways, making it more difficult to breath. The cilia are unable to clean out dirt and mucus from the respiratory system. Symptoms of the disease include recurrent ear and hearing loss, persistent runny nose, reversed organs and infertility. It is often misdiagnosed as asthma or Cystic Fibrosis, which is its sister disease.
Anne Bednar, who helped connect the Shops at the Riverwoods with the PCD Foundation in 2014, didn’t know much about PCD before her son, Sam, was diagnosed with the disease in 2013. Sam was born with reversed organs, meaning the organs were on the wrong side of the body, and he had difficulty breathing. He lived with a ventilator for the first two years of his life.
“It’s helped us to slow down and prioritize and remember what’s most important,” Bednar said. “And it gives us more empathy for people who struggle as well.”
“I had a desire to connect with Utah families and people who have this rare disease. … I had this thought when we drove pasts Riverwoods that we would benefit from more research.”
— Anne Bednar, PCD Foundation supporter
After moving from Michigan to Utah, Bednar was driving past the Riverwoods with the thought weighing on her mind on how to help her son.
“I had a desire to connect with Utah families and people who have this rare disease,” Bednar said. … “I had this thought when we drove pasts Riverwoods that we would benefit from more research.”
Bednar decided to contact the Shops at Riverwoods. After meeting with organizers, the organizers agreed to have the Pumpkin Parade in October 2014 benefit the PCD Foundation. Now 2017, the partnership benefiting the PCD Foundation has been moved to the Lighting of the Riverwoods in November and throughout the entire holiday season leading up to Christmas.
Through the partnership, Bednar hopes they can build a community and help raise awareness, especially if the awareness can lead to money for research such as what happened with PCD’s sister disease, Cystic Fibrosis.
“From state to state, those grass root efforts led to a huge community,” Bednar said, “and now they have millions of dollars to help research funds. Now they have treatments for lifesaving efforts.”
The Shops at the Riverwoods have S’more Stations set up on Friday and Saturday night, Dec. 22–23, from 5 p.m. to 8 p.m. Each s’more costs $1 and all of the proceeds go to the PCD Foundation. There is also a donation box at the Santa House at the Shops at Riverwoods.
Learn more about PCD and the PCD Foundation at pcdfoundation.org.