03/12/2015:

Name: Donavon  Age: 52

Country: United States

LGMD Sub-Type: LGMD2D

At what age were you diagnosed:

I was diagnosed at the age of 16

What were your first symptoms:

I was never able to run very fast and had problems running up stairs. We lived on a farm part of the time and when it came to doing chores I wasn’t able to lift a full bag of feed.

Do you have other family members who have LGMD:

Yes, I have four sisters and two nieces with LGMD.

What do you find to be the greatest challenges in living with LGMD:

All the help that I have needed over the years and it continues to be more each year. I am very thankful for my great wife and the great friends that have helped me over the years. My sister Monica passed away in 2012 from complications from LGMD, so that is in the back of my mind knowing I am getting weaker.

What is your greatest accomplishment:

Being the first person to ever have gene therapy done for Muscular Dystrophy. I called a doctor monthly after my gene defect was identified and when they were starting the first trial I volunteered. The gene therapy opened a lot of opportunities for me as I testified in the United States Senate. I helped lobby the first MD Care Act in Washington DC. I also served on an oversight committee at the National Institutes of Health for six years.

How has LGMD influenced you into becoming the person you are today:

Because of my LGMD I think I have had to fight harder for jobs … some people hear I have Muscular Dystrophy or see me in a wheel chair and think I’m not able to doing anything. As a result I’ve developed a very determined and optimistic approach in many aspects of my life. I see other people that are disabled differently since I know some of the struggles they deal with on a daily basis. I’m thankful that I am a Christian as someday, if there isn’t a cure while I am alive, there will not be any diseases in Heaven.

What do you want the world to know about LGMD:

I believe we are very close to a treatment or a cure. I was involved in the first gene therapy trial back in 1999 and I am very excited to see this next gene therapy trial get started where they will be using the blood system to deliver the new vector.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

Driving a car or pickup instead of driving a van. Someday I would like to have another Pontiac GTO.