Christine Piacentino's Blog (32)


Getting ready for the normal high school milestones in our house is always a creative endeavor. At the beginning of April Jon came home from school and said that he wanted to attend Prom. He asked if he could attend the prom without renting a tux. Our goal is to have Jon experience all the normal things kids his age get to experience. I said, yes we should get a tux. The month of April flew by. On…


Added by Christine Piacentino on May 19, 2010 at 11:30am — 3 Comments

Partial Wind in My Sails

The wind in my sails may be coming back.

Two things have occurred that provide me with some hope that Ataluren may still be viable.

One was the…


Added by Christine Piacentino on May 7, 2010 at 9:10am — No Comments

My Idea of Normal

There some days when I think that my life is just not normal. When I start thinking this way I really need to remind myself that normal is a relative term. How a person deals with life is really defined by personal circumstances of their past and present life experiences intertwined.…


Added by Christine Piacentino on March 28, 2010 at 10:00pm — No Comments

Wind in My Sails

Wind in My Sails…


Added by Christine Piacentino on March 10, 2010 at 7:00pm — 6 Comments

Finding the words

I haven't posted a blog in a while. I'm never sure what to say. My words are never as eloquent as Pat Furlong's or Brian Denger's. The gift for words has always seemed to escape me. My gift for finding the right words was really put to the test this week.

On Tuesday morning, on my way to my office in Buffalo, I found out that one of the families that helped me fundraise for Coach to Cure MD in upstate NY had their 4 year old son pass away without warning on Monday. Devastating news!… Continue

Added by Christine Piacentino on November 8, 2009 at 11:36am — 4 Comments

Being a Pioneer (Part 2)

Things have progressed since November 2008. Jon has decided to continue in the PTC trial and is particpating in Muscle MRI trial at the University of Gainsville. When I asked are you sure, he said "Mom - if I am able to particpate in these trials, I think I should": "Not all the boys can." So with Jon's determination and Dad's help Jon remains an active participant in these trials. My husband and son continue to make trips to University of Utah for the PTC trial and to Gainsville. The trips… Continue

Added by Christine Piacentino on July 8, 2009 at 8:08am — 2 Comments

15 things about my family that make me smile

1. Jon cooking dinner for me on the days I work in Buffalo.

2. Mike grocery shopping and make sure the fridge is always stocked so Jon can create his dishes.

3. Kat's funny stories are like a stand-up comedy routine that make me laugh out loud.

4. Kat and Jon hanging out and watching movies together when she is home from college.

5. Mike, Jon and I watching natures beauty like 65,000 bats going on their nightly feed.

6. Jon telling me being a human lab rat is not so… Continue

Added by Christine Piacentino on April 25, 2009 at 8:50am — No Comments

Being a Pioneer

The past two months have been difficult for me. We have started the PTC 124 extension trial. We have waited for baited breath for the last two years to start this trial.

My son, who is more than willing to try any therapy if he thinks it will help, balked at the plan. I came home from work late one night to find my son in a state of total melt down. Yes, at 15 we have melt downs. For the past two months it has been a struggle to gag down the vanilla flavored drug. Given his age and… Continue

Added by Christine Piacentino on November 22, 2008 at 8:58pm — 3 Comments

Newspaper Article about the Piacentino Family


By Mike Costanza, correspondent

Penfield Post

Posted Nov 04, 2008 @ 07:05 PM


Penfield, N.Y. — Christine Piacentino remembers Dec. 31, 1997. That was the day she and her husband, Michael, learned their 4-year-old son, Jonathan, had Duchenne muscular dystrophy.

The news hit the Penfield couple… Continue

Added by Christine Piacentino on November 22, 2008 at 8:10am — No Comments

Medic Alert Bracelet Information

I get asked for this information quite often. I'm still getting used to this new site. I thought this might be a way for people to get at the information easily.

You can access the Medic Alert Website at (US) (Canada)

They provide a bracelet that your son should wear at all times. My son wears his 24 7. I worked closely with my pediatrician and one of the medic alert nurses to determine what should be on the bracelet. My son's… Continue

Added by Christine Piacentino on August 13, 2008 at 6:29am — 5 Comments

What I know now. What I didn't know then.

What I know now after 10 years of Duchenne affecting my family.

Life with Duchenne is a roller coaster.

Hope is constant.

Duchenne does not define my son's life, my son define's his own life. Duchenne is just something we deal with.

It's really OK to question the Doctors and understand what they are doing and why they are doing it.

Sometimes I know more than the Doctor treating my son. I will need to provide Duchenne education to… Continue

Added by Christine Piacentino on August 12, 2008 at 8:52pm — No Comments

My Hero Everyday!!

Jonathan is my hero! Not much stops him, even though he has Duchenne Muscular Dystrophy. He is a good student and has earned enough merit badges in boy scouts to become an Eagle Scout. He is working on his community service project which is the last requirement to obtain the eagle scout rank. He is a member of the order of arrow fraternity in boy scouts. He has a great personality and laughs all the time. He is my inspiration every day. Jonathan told me "Mom, so what, I have Duchenne MD. No big… Continue

Added by Christine Piacentino on July 4, 2008 at 4:32am — 2 Comments

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