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PPMD Conference

After 14 years of holding conferences, writing a review should be relatively easy and in some ways it is. Parents and family members gather to learn, to find something, to understand better, to gain strength. Some are new to the diagnosis, the word Duchenne muscular dystrophy a recent addition to their vocabulary. They are raw, tender, bruised and brave making the decision to attend and commit three days of precious time. It is amazing to me to see the community, sitting, attentive, at times fighting tears, but listening, always listening, hoping for that on bit of information that they can use, take home, pin their hopes to.

I am not planning to provide a scientific review of the conference. Guenter Schuerbrandt will do that for us. In addition, we will post some of the powerpoint presentations (other than those deemed confidential by the presenter) and soon after pod casts of some of the sessions.

One session not to miss is the Expert Panel. The panel, comprised of 5 young men with Duchenne and Becker muscular dystrophy spoke, eloquently to the audience about their view of life, their quality of life, their dreams, expectations. Maybe for some in the audience, their obvious love for life came as a surprise. All too often we look at others and make some predetermination about the quality of their life, based on our expectations, our wishes, our dreams. Conrad Reynoldson said it best “I may have a gene deletion, but I don’t have a dream deletion”.

As parents we watch Duchenne steal function and with each blow, it feels like we die a little bit and I think we guess that our son feels the same. After listening to the Experts, it feels a bit different. We do want to EndDuchenne. We want to stop progression in every individual diagnosed with Duchenne or Becker muscular dystrophy. At the same time, our message to our sons must be that we love them, that life is good and each day important and relevant.

The conference was a success in so many ways, but our sons are the real success story.

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Staff Comment by Pat Furlong on November 6, 2008 at 11:01am: Hello Pooja,
Next year's conference will be in Atlanta, Georgia June 25-28, 2009. In addition, we are working with a number of families from India and are organizing a workshop for February, 2009. I believe this is to be held in Bangalor and another meetingin May is scheduled, though I do not have the location at this time. I am meeting with our international partners this weekend and will provide additional information next week.
Sincerely,
Pat

Comment by pooja gupta on November 6, 2008 at 9:55am: hello pat,
I am from india and my son who is 4 1/2 years old is suffering from DMD. I have heard so much about your organisation and i am keen to be a part of your annual conference next year. Could you please help me regarding this.
warm regards
pooja

Staff Comment by Pat Furlong on September 11, 2008 at 1:28pm: Hello Kasey,

Thanks so much for your kind words. It means a lot to me. Like you, Duchenne entered my life, uninvited, unexpected and unwanted. But now it's here and we have to do something about it. The only way we can help our sons and ourselves is by increasing our base of knowledge, our understanding, exploring together and hearing voices of our boys/young men. We have some good ideas about next year's conference and are already planning. If there is anything I can do to help, guide or explain, please do not ever hesitate to ask.
Warm regards,
Pat

Comment by kasey on September 11, 2008 at 12:40pm: hi Pat,
thanks so much for all your hard work and dedication to the families and children who are in need of information about duchennes and I can't wait to be able to attend a conference, hopefully the one in2009.
Sometimes all we need is just a few words to know there is life after duchennes and there are people who understand and care about those of us who are coping and trying to deal the best we can eith the knowledge we have and I am so anxious to be able to go to a conference and actually here from the expert panel to see their faces and to share their life experiences. Hope to be at the 2009 conference and hope to meet you one day. Take care,
Kasey

Comment by Donna on September 9, 2008 at 8:52am: Hi Pat

where and when is the conference for 2009? I'm hoping to be "ready" to go by then. Donna

Staff Comment by Pat Furlong on August 7, 2008 at 7:23pm: Rebecca, I will look forward to seeing you again next year. I am happy you thought the conference worthwhile. If you have suggestions/comments/ideas, please send them along.
Warm regards,
Pat

Comment by Rebecca Saulsbury on August 5, 2008 at 4:19pm: Thank you, Pat, for all you do. I want to commend you and your staff on what was, for our family, a life-changing event. I heartily agree with you that the highlight of the Conference was the Expert Panel and their obvious exuberance for life. That part of the presentation was worth every minute of ten hours of travel it took to get there!
With luck, see you next year
Rebecca Saulsbury