I thought a lot about what I would write in my first blog, and I realized I could go on and on with my feelings about Muscular Dystrophy and its impact on my life and my family and friends.... I won't be able to put down all my thoughts in one blog, but I guess the good thing is that I have lots to write about.
A few months back I was searching on the internet for any new research or information on Duchenne/Beckers. I have tried to keep an eye on the goings on in the 'community', making sure I was aware of any progress and hope for real positive treatment options.
You may wonder why, well I am 39yrs old (40 in May) and have been diagnosed with Beckers, with a duplication of exons 3 and 4. That's a discussion for another blog.
To add to my story, I am married for 11 yrs now to my amazing wife and we have 3 beautiful children, a 7 yr old daughter and twin 3 yr old boys. We are blessed with so much, they are all healthy and happy kids! Being a parent with BMD has many challenges and certain limitations, but the children adapt so well to the circumstances of our household, to them mom and dad are no different than other moms and dads, we just use a mobility scooter and a power wheelchair.
Back to a few months ago. I had seen the PPMD website before and was always impressed with all the work being done by PPMD. Something was different this time. I saw a link posted by Annie Kennedy, requesting adults with Duchenne/Beckers to submit a bio and resume to join a new committee, the PAAC. I was so excited about the possibilities of what such a committee could do in the fight against Duchenne/Beckers. I was and am honored to have been selected to be a part of the PAAC. Now that I am a member of the PPMD community, I have learned that there are so many great people doing amazing work. Just having the opportunity to be a part of the PPMD and the PAAC at such a crucial time in the development of real positive treatment options is just so exciting.
The PAAC, what can I say... Getting to know Annie Kennedy and the dedication she has for the cause is inspirational. Having had the chance to talk to and meet the gentleman that make up the PAAC, we all have faced so many similar challenges in dealing with Duchenne/Beckers, we are like 'brothers in arms' fighting the good fight against Duchenne/Beckers!
It is exciting to see that there are many talented and intelligent men with DBMD that will help guide the PPMD with our own unique perspective on DBMD which no one else does. I'm looking forward to working with the PAAC and PPMD.