28 March 2010 - by ~ 1 Comment

Blogger Introduction: Charles

I have been a member of the DMD Pioneers Mailing List on Yahoo! Groups from the beginning. Along the way I have been able to learn a lot of valuable information but most importantly I have been able to make a connection with so many incredible people with DMD and other similar conditions. Many of the friends I have met through DMD Pioneers are no longer with us but their pioneering spirit continues to live on in all of us who refuse to give up on living.

Nearing the age of 30, I have been blessed with exceptional health for someone with DMD. I have been fortunate to have a great team of physicians who are pioneers in their fields of practice. I know that this is not the case for everyone and it is often a struggle to find good doctors that understand the needs of those with DMD and similar conditions. But things are moving forward; as people with DMD continue to live longer new strategies are being developed that extend life and improve the quality of life for us.

For a long time the focus has been on curing the disease and not in the practical area of living with the disease. Let the researchers continue in the search for a cure, but while they go forward in their quest let us go on our own and discover the ways we can benefit each other.

I, along with the rest of the bloggers have come together to give a little bit of ourselves for the benefit of those living with Duchenne Muscular Dystrophy. From me, expect to hear about things that have worked for me, things that haven’t gone so well, news about DMD and observations I have made. You can also expect me blog about the light side of life and humor that goes along with it.  I will also provide updates about this website and other happenings in the group.

To learn more about me outside the context of this website, be sure to visit my personal website at jedicharles.com.

  • Jonathan Hinek

    As you probably know, I agree with everything you say about us needing to put more emphasis on practical treatment options for us, the people living into adult, surviving and even thriving with this disease.