PCD Foundation Blog

One of our biggest challenges, as people who care about PCD, is raising awareness about the disorder–not just in the medical community, but also with the general public. We all have had the experience of saying PCD or Kartagener’s and seeing eyebrows raise in confusion. For me, I generally try to describe PCD by saying “it’s like CF” or “it’s a little like really bad asthma,” trying to find a common frame of reference, but I’m always aware that those comparisons don’t do justice to accurately describing PCD. I’m convinced that one day PCD will have the same name recognition as cystic fibrosis–we just have to be persistent and creative in finding opportunities to raise awareness. Here is a really neat story from Kansas City that illustrates how patients can find/make these opportunities.
High school student Ashli from Olathe, Kansas was diagnosed with PCD last October after a lifetime of illness. Like many PCD families, Ashli and her mom, Vicki Bicknell, were very frustrated about the delay in diagnosis and the pervasive lack of awareness about PCD, even among the specialists Ashli had seen throughout her life. This frustration translated into motivation to get involved in PCD awareness. Ashli’s Ethics Class at Olathe South High School was looking for ideas for a community service project for the students. This was a comprehensive project, getting the students involved in choosing a cause, fundraising for their selected cause, and providing all the support services (marketing, public outreach, etc) that go into creating a successful event.
Bravely sharing her personal experience, Ashli spoke to her class about PCD and about the importance of patient organizations to support disease education and research efforts. Her presentation moved her class to choose the PCD Foundation for their Ethics Class project. Ashli, her mother, her classmates and her teachers worked very hard to organize a fundraising effort, soliciting donations from local companies and selling donated items on behalf of the PCD Foundation. They also arranged for an educational seminar to be held in the Olathe South High School auditorium and invited speakers from the PCD Foundation to talk about PCD, the importance of rare diseases research and why patient organizations are important. Local media outlets were invited and the session was taped for possible use in future news or print media stories. About 300 students, faculty and interested individuals attended the seminar. Johnny Carson, PhD (UNC) voluteered his time to come to Kansas City and explain what happens in PCD and how he got involved in PCD research. He highlighted that rare disease research makes a positive impact on everyone–not just the people with the rare diseases, and encouraged the students to get involved in fundraising and support for rare diseases research and also to consider pursuing education in the research sciences. Meghan Manion and Ashli Barker spoke about their personal experiences and what it’s like growing up with a rare chronic illness They were very open about the challenges and encouraged students to ask questions. I shared my experiences from the parent perspective and talked about starting a patient foundation (and took the opporunity to share darling baby pictures of Meghan!).

Ashli, with the full support of her mother and teachers, put a tremendous amount of time and effort into this event and did a phenomenal job of organizing a very comprehensive PCD awareness program. As a result, $4,000 was raised for the PCD Foundation and now the young people of Olathe, Kansas are more informed than many medical experts about PCD!
It was a real honor for us to be invited to speak about PCD (my favorite subject) and to hopefully encourage the next generation to consider choosing education/career paths that may help people with rare diseases. Special thanks to Johnny C., Meghan M., Mrs. Ruth Ann Falls, Mrs. Birch and the rest of the Olathe South High School administration and especially to Ashli Barker and Vicki Bicknell!

Michele