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…

young_letter.docx

I thought that you might want to see what my "wonderful" congressman said about funding for research when I sent him the letter from ppmd.

When the word Duchenne enters our home, we are often stuck in the mud of negativity. It feels like the diagnosis removes all of the hopes and dreams we had attached to our son’s life. We search the internet, speak with doctors and researchers, connect with other families, and find that the predictions and statistics of Duchenne are the only lyrics on the iPod of our brain. For some families, life feels like it is over, that the rest of this journey will be filled with…

Hayden (our oldest) is in Kindergarten and I wasn't too surprised when we gave me a card this morning they made in class.  What did surprise me was the poem included in it, and how I couldn't hold back a few tears after reading it.  It hit a little too close to home and made me thing about how important it is to slow down once in a while and enjoy the time we have.

"Walk a little slower Daddy,"

said a child so small,

"I'm following in your footsteps…

I don't know about you but after 12 years of dealing with Duchenne I have learned to become quite an actress.  Early on I realized that no matter what we do we are on the outside of the "mom" world.  You start to realize either you need to get on the bandwagon and act like all the inane problems mostly self created everyone have are interesting or choose to sit alone on the sidelines with your real problems that you did not create and wallow in self pity.  So, I took up my acting career in…

He did it!  He went to camp and had a great time.

He flew on the zipline, he boogied on the dance floor, he even went horseback riding.

It took about a…

Happy Graduation to all of the young men in this community!  Whether it be grad school, college, high school, middle school, elementary school, or even kindergarten–graduation is a major milestone in Duchenne. (Take a minute to acknowledge the graduates in your life on our Facebook page!)

It has been awhile since I have attended commencement exercises, high school, college, or graduate school.  This year I had quite a…

On June 1, I joined the WNW, the launch of Inspired Wining and it was amazing!  But that’s what happens with women, steel magnolias all of them, who hold each other together through good times and bad.   Six friends, who make a plan to come together on a regular basis to share, to support, to uplift, to mobilize, to change the world.

 …

Eli Razon from Easy Walking Inc. has introduced a new device to the neuromuscular community. Tina Duong, a PT from Children’s National Medical Center, has recently had some hands-on experience. Michelle Eagle (Newcastle) and Laura Case (Duke) have also commented.

The thought is that this device might be useful for boys/adolescents in the transition stage (loss of ambulation) and/or potentially to help regain ambulation following fracture.

The concept…