pcd-6.jpg
What PCD Awareness Month Means to Me
Written by Michele Manion    Thursday, 29 September 2011 13:56    PDF Print E-mail

The PCD community is the best in world!  I really mean that and it is not just personal bias.  I have worked with lots of different patient groups and, while all share passion and a drive to make things better for their loved ones, there is an extra element in the PCD community that is hard to define.  Maybe it’s because there aren’t a whole lot of us (yet) and this brings us closer.  Maybe it’s just that we have felt isolated for so long there is just a sense of supportive joy at finding one another.  Whatever it is, it’s wonderful and we are truly lucky to have it!

The PCDF receives notes, donations and offers to help every single day.  Because all of us involved in PCF activities have first-hand experience with PCD in some capacity, we are well aware of the daily struggles—financial, emotional & practical--faced by families with PCD and it means so much to us that you are all so willing to support us!

Back in 1991 when I was a single mom who had just received a frightening diagnosis for one of my two children, I could not have imagined a PCD community like what we have today.  I was told point blank that there would never be research on this disorder—it was too genetically complex and too rare. There was no organization pushing for better care for PCD, no research going on anywhere in the world, no way to connect with other families and, seemingly, no hope for a better future for my beautiful little daughter.  Back then, there was not even agreement on what to call this disorder (still a problem in some areas).  It’s pretty hard to be ‘aware’ of a disease when people can’t even agree on what it’s called!

Today we have a patient advocacy organization for PCD, educational activities both electronic and face-to-face, social networking options to stay in touch and PCD research network with seven top-notch research centers doing work on PCD.  We are moving forward with initiatives that will expand our current network and provide access to desperately needed research for those with PCD.  The complexity of PCD genetics is being painstakingly unraveled by dedicated researchers both in the United States and around the world, promising better understanding of PCD and hope for therapies and eventually a cure.

Best of all, the word IS getting out about PCD.  PCD has been featured at medical conferences and educational events for professional societies.  When I attend medical conferences, I no longer get a blank stare when I say I am with the PCD Foundation (at least not as often as before).  Patient stories have appeared online, in local press vehicles and on media broadcasts.  PCD families are sharing their experiences at schools, universities, churches and even VFW halls!  This is how awareness is built. It’s not from snagging a nearly-impossible-to-arrange guest spot on Dr. Oz (although we wouldn’t turn that down!).  It’s from real people in the trenches who are willing to tell their neighbors about PCD.  YOU have raised PCD awareness.

This is what PCD Awareness month means to me—the incredible journey we’ve been on to get to where we are today and the incredible journey yet to come.  For all of us who have PCD or who love someone who does (or both!) progress will never come fast enough.  That passion is the fuel that drives us to keep moving forward and we need it.  But I think we can also take a moment in October to reflect on what we have accomplished—as a patient group facing enormous hurdles—in a few short years.  Let’s be proud of our progress and use it to motivate us to keep working!

The PCD community is the best in world!  I really mean that and it is not just personal bias. Over the years I have worked with lots of different patient groups and, while all share passion and a drive to make things better for their loved ones, there is an extra element in the PCD community that is hard to define. Maybe it’s because there aren’t a whole lot of us (yet) and this brings us closer.  Maybe it’s just that we have felt isolated for so long there is just a sense of supportive joy at finding one another. Whatever it is, it’s wonderful and we are truly lucky to have it!   Read More

The PCDF receives notes, donations and offers to help every single day. Because all of us involved in PCD activities have first-hand experience with PCD in some capacity, we are well aware of the daily struggles—financial, emotional & practical--faced by families with PCD and it means so much to us that you are all so willing to support us!  

Back in 1991 when I was a single mom who had just received a frightening diagnosis for one of my two children, I could not have imagined a PCD community like what we have today.  I was told point blank that there would never be research on this disorder—it was too genetically complex and too rare. There was no organization pushing for better care for PCD, no research going on anywhere in the world, no way to connect with other families and, seemingly, no hope for a better future for my beautiful little daughter. Back then, there was not even agreement on what to call this disorder (still a problem in some areas).  It’s pretty hard to be ‘aware’ of a disease when people can’t even agree on what it’s called!  

Today we have a patient advocacy organization for PCD, educational activities both electronic and face-to-face, social networking options to stay in touch and PCD research network with seven top-notch research centers doing work on PCD. We are moving forward with initiatives that will expand our current network and provide access to desperately needed research for those with PCD.  The complexity of PCD genetics is being painstakingly unraveled by dedicated researchers both in the United States and around the world, promising better understanding of PCD and hope for therapies and eventually a cure.   

Best of all, the word IS getting out about PCD.  PCD has been featured at medical conferences and educational events for professional societies.  When I attend medical conferences, I no longer get a blank stare when I say I am with the PCD Foundation (at least not as often as before). Patient stories have appeared online, in local press vehicles and on media broadcasts. PCD families are sharing their experiences at schools, universities, churches and even VFW halls!  This is how awareness is built. It’s not from snagging a nearly-impossible-to-arrange guest spot on Dr. Oz (although we wouldn’t turn that down!). It’s from real people in the trenches who are willing to tell their neighbors about PCD. YOU have raised PCD awareness.  

This is what PCD Awareness month means to me—It is the incredible journey we’ve been on to get to where we are today and the incredible journey yet to come. For all of us who have PCD or who love someone who does (or both!) progress will never come fast enough. That passion is the fuel that drives us to keep moving forward and we need it. But I think we can also take a moment in October to reflect on what we have accomplished—as a patient group facing enormous hurdles—in a few short years.  Let’s be proud of our progress and let's use it to motivate us to keep moving forward!

Michele Manion