Redefining traditions. This year, Tom, my girls, my son-in-law, and I chose to gather in New York City for Thanksgiving. Well, "chose" may be the wrong word. New York City is just logistically easiest. The truth is, we would meet up with our girls in Antarctica if it meant we could be together during the holidays.
When our boys…Continue
Whenever someone asks me how things are with my family I sometimes find myself going into this quasi self preservation state. It’s as though I have this bubble surrounding me and depending on how large an opening their questions create, more of my world will envelop them. Maybe “self preservation” is an inaccurate description. It’s more that I begin this quick assessment of the person asking to determine how much detail I want to provide beyond the cursory “We’re all doing fine”. …Continue
Like every other profession in the world, there are inside jokes in medicine. Random friends and acquaintances send photos or comic strips characterizing nurses as battle-axes waving syringes or doctors ignoring the patient, calculating their golf game. In other cartoons, women are caricatured over time by the degree their breasts sag.
Today, I received this from a friend:…
Added by Pat Furlong on November 21, 2011 at 10:24am — No Comments
My son Patrick and I had plans to go to Columbia, South Carolina this week. It was to be a father-son weekend just hanging out. While participating in the Exon Skipping Trials at Nationwide Children’s Hospital last year his manual wheelchair was damaged. The airlines repaired the chair and in a “goodwill gesture” they also provided two round trip vouchers for us to use at a later date. South Carolina was Patrick’s choice and he had a good reason for wanting to…Continue
The death of Brady Sherman (14 years old) is heartbreaking and strikes fear in the hearts and minds of every parent of every boy with Duchenne. It is so frightening that the idea of wrapping your son in bubble wrap to protect him or never letting him out of your sight, makes perfect sense.
Today we do not have any concrete answers about Brady. We have some ideas about what happened and have been connecting with experts (pulmonary, cardiology,…Continue
Co-Blog – The following is a co-blog put together by myself and Ivy Scherbarth, a mother from CO and PPMD’s FACES Coordinator for CO/WY. This is a new project we have started where we will both write on similar topics from two different perspectives, but living in the same world of Duchenne.
To Have and Have Not with Duchenne
At the recent World Muscle Society meeting, which took place in Portugal, a great deal of new data on exon skipping was presented, both on the status of current human clinical trials and on the efforts of investigators to improve the efficiency of the technique by combining exon-skipping with gene and stem cell delivery. Below are a few highlights from the meeting with the caveat that it was impossible to cover every poster and talk.
Muscle Stem Cells
Added by Andrea Cleary on November 4, 2011 at 9:16am — No Comments
Added by Ann Martin on November 3, 2011 at 8:30am — No Comments
It was three o'clock and I decided to stand outside to wait in my new hot pink beehive wig. Just as I finished adjusting the three plastic black spiders, that cascaded down the sides, I saw the school bus coming. It did not take long for my Josiah to notice. He immediately lifted his head smiling.
I watched as the bus aid began to unbuckle the tie downs that kept his wheelchair in place. His smile widening as I blew him a kiss. Strapped behind Josiah was my middle son Cody. He was…
Added by Rita Felling on November 2, 2011 at 2:50am — No Comments