|Message from Our Founder|
From Michele Manion
Thank you for visiting the PCD Foundation online. It’s hard to believe that almost ten years have passed since we turned the frustration with the lack of attention to PCD patients, treatments and research into a foundation dedicated to serving the needs of our patient community.
My now 28-year-old daughter, Meghan, was diagnosed with PCD at 7 years of age. It was incredibly difficult to get a diagnosis, much less find appropriate treatment. I wanted to talk to other parents about their experiences, fears and how they handled the day-to-day challenges of helping (and loving!) a child with a disease that has many more questions than answers – and even conflicting answers in the medical community. Was it serious? Was it no big deal? What will her future be like? No matter what I heard from the doctors, I knew my child – and I knew she was sick— a lot. On the other hand, when she wasn’t sick she seemed so well it was hard to know how seriously to take the problem. I was devastated to find that there was no group, and felt more isolated than ever.
Now there is a patient group. We are the PCD Foundation and we are doing everything we can to improve the lives of our patients and to develop the means to find a cure for more healthy tomorrows. We welcome your ideas, suggestions – and any time and energy you have to share to keep building the momentum. In just a few minutes, you can volunteer, make an online donation, or sign up as a patient liaison to help PCD patients and families or become an advocate for public policy changes benefiting those with PCD.
Together, we will make this happen!