No News Is Good News

Happy 50th Birthday to me!  Nantucket with our Fabulous Friends!

I really don't have much of an update except to say that my doctor at Dartmouth reported no progression since the last exam.  The exam is not, what I would call, truly scientific but more observational. Nevertheless, I'll take what I can get! I did have an episode where I passed out and was taken to the hospital.  Stress, activity, travel, medicine and yes booze, all combined together, led to a late night visit to the ER.  No one ever accused me of being a genius! 

June marked two significant milestones.  I made it to 50....yea!  June also marks the one year anniversary of when Megan first noticed the early symptoms of ALS.    The thought of it still gives me chills.  One year in the books and hopefully I'll be able to log many more so that I can beat the bell curve on this unwelcomed life partner of mine. 

On another note, I have a  friend who has been impacted by ALS when his grandmother was diagnosed and ultimately succumbed.  He does a ride to raise awareness and money for ALS research.  The reality is that at any given time, due to the short life expectancy, there are 35,000 Americans alive and dealing with this disease.  Not a lot in the overall scheme of things, when you compare it to other more notable diseases, and as such does not get the attention, research and ultimate funding it deserves.  We need a Michael J. Fox  in our camp...just kidding.  I have attached his story and link if you are so inclined to support him in his 3 day 270 mile trek.  I have to admit, it is difficult for me to read. 

Hello,

 

I hope this letter finds you well.   This summer, my team and I will ride 270 miles by bicycle in the ALS/TDI Tri State Trek to raise money and awareness for ALS, a disease that claimed the life of my great grandmother.  ALS TDI is an organization that is committed to ending Amyotrophic Lateral Sclerosis (ALS) through the funding of cutting edge scientific research. ALS, commonly known as Lou Gehrig's disease, is a neuromuscular disorder that attacks and destroys the body's motor neurons. As these are destroyed, the brain becomes unable to send messages to the muscles which then weaken and lose their ability to move. In time the muscles atrophy and the person becomes unable to walk, talk, eat, and eventually breathe. Throughout the progression of ALS the brain is completely functional, and a person is fully aware of what is happening leaving the person trapped in his/her body.  There is no treatment and no cure for the disease, which typically proves fatal in two to five years. Scientists are still unsure as to how or why 8,000 Americans are diagnosed with the disease each year.

 

My story: In 1992 my great grandmother Mary Agnes Fortune (Gigi) passed away after a long and courageous battle with this horrific disease.  In 2011 I joined Team Easy Riders (8 riders) and together we were able to raise over $15,000 to support ALS/TDI research. This year, after a 2 year hiatus, I am returning to the trek to support a family friend and father of 2 who was recently diagnosed with ALS. Your support means so much to me and to all the families that have been affected by this terrible disease.    

 

                In support of ALS TDI and the important work they do, our team has committed to a lofty goal of raising $3600.00. Contributions of any amount are very much appreciated no matter the denomination. We will train to complete the 270-mile ride in three days. The ride is a challenge and my training is intensive, but ALS demands our attention and I will do all I can to help.

 

Here's how you can help:

Donate! It’s easy

 

Online:    http://tst.als.net/TeamFatTire  

               

Old School:  Checks can be mailed to me (please make it out to ALS Therapy Development Institute)

                                                Ryan Paveglio

                                                                24 Copley Ct

                                                                Auburn NH, 03032