I posted a new blog post.  Please view it at:

http://christinepia.blogspot.com/

Last week I participated in a pod cast called Kitchen Table Conversations with HerSelf First.  I really enjoyed the conversation with Sheila Moeschen, Kathy Kinnett, and Kris Hersom.  It was truly an enlightening conversation! Click here to listen to the Podcast.

As I was preparing for this conversation, I realized that a lot of time is spent focusing on my son. As…

For the past month I felt like the old TV show MacGuyver more so than normal or the line from Project Runway, “Make it work!”   At the end of March I finished a five year assignment in Buffalo NY.  I live in Rochester, NY.  For anyone that doesn’t know how far that is, from my home to my office I logged approximately 176 miles round trip; about three hours a day driving.  Most people…

Jon’s second semester at college has been rewarding and frustrating.  While Jon is on campus, things are a little easier.  Jon has a power chair that is stored on campus and he can navigate independently.  Jon doesn’t have a power chair yet permanently.   He can still walk and get in and out of a regular car, with a little help.  However, getting power chair of his own and an…

My family has made advocacy part of our End Duchenne agenda for many years.  My daughter Kat, Jon, and I have always tried to attend the advocacy conference.  This year Kat and I will attend; but Jon’s college studies will prevent him from attending.  Biology, Analytical Chemistry, and English are taking up his free time. Jon really wants to make sure he doesn’t miss any of…

Having sons with Duchenne forces us into advocating for services, equipment and optimal health care.   In reality, whether we are getting services for our son at school, dealing with insurance companies and doctor’s in trying to get the best care, or meeting with staff and members of congress we are advocating.  In 2000 when Parent Project Muscular Dystrophy first organized their advocacy efforts in Washington DC, my family felt it was important to meet with our members of congress. By the…

Ever since Jonathan was diagnosed with Duchenne, I’ve often wondered and reflected on what his life would be like.  I’m always surprised and impressed with his can do attitude.

As we looked at colleges and careers, Jon made the decision to live at home on his own.   I was worried that he was making his choices based on what his Dad and I thought.  When we discussed living away…

I attended the PPMD Annual Connect Conference earlier this month.  Each year I always try to come away with something concrete  This year I found the session entitled Herself First very helpful and informative. It was of course geared toward Mom's caring for Duchenne guys.  However, I think women in general need to be able to concentrate on themselves.  Women in general are usally taking care of everyone one their families and neglect themselves.  One of the points from this…

This month has been extremely busy!  Jon has fully particated in the senior events this past month leading up to graduation. Senior Ball, Senior Bash and the Senior Convocation Ceremony.  Jon has always had a fighting spirit.  He made a decision early on not to let Duchenne get in his way.  We had an issue with the Convocation Ceremony causing Jon not be able to stand from the seat he was sitting in.  The chairs in the auditorium have…

My knowledge and my ignorance were highlighted over the past couple of months. 

We changed Orthotists.  Jonathan for many years wore custom made night splints and shoe inserts.  The new othotist explained to us how poorly made Jonathan’s old inserts and night splints were and how they really were not helping him. The night splints were heavy and caused his legs and feet to sweat.  The shoe inserts were not helping and caused his feet to come out of his shoes. All this time we…

Jon finally became and Eagle Scout in February.  Achieving this honor took 12 years and 33 Merit Badges, the Rank of Brotherhood in the Order of The Arrow.  His Eagle Scout Project involved his love of nature and biology to build Bat Houses.  Jon’s service coordination for DDSO in NY State is thru Heritage Christain Home.  Heritage Christian Home supports independent living centers, a working farm and a therapy riding stable.  Jon built a demo bat house, and 6 other bat houses for one of the…

My advocacy efforts started very early on. It all started at the PPMD Annual Conference, when Dr. Lee Sweeney said “To improve lives of patients with Duchenne and Becker Muscular Dystrophy the real change would have to come from the government through the National Institute of Health. Awareness about Duchenne and Becker needs to be increased within the NIH community”. I did not know any one at the NIH so I decided to contact my Congressional representative. In 2000 it was…

"Faith is the very first thing you should pack in a hope chest." ---- Sarah Ban Breathnach…

Yesterday, the 2010 WebMD health heroes were announced.…

This past month was a series of ups and downs. At the end of July PTC released an update on the Ataluren Data at International Congress of Neuromuscular Diseases. The information was similar to that released before. The low dose study showed benefit versus the high dose. There was really no timeline determined…

Over 4^th of July weekend Jon got a couple of phone calls from his friends. That weekend was pretty busy. But, phone calls for Jon to attend parties are rare; we almost never give up any opportunity for him to attend a party with his friends. We always try and make it work.…

In the weeks leading up to the conference call with PTC on May 27^th all I kept hearing in my head was the chorus from a song from the musical Jesus Christ Superstar – What's the buzz?

Tell me what's a-happening?…