Hope for the Future
Benefit will help raise funds for treatment of muscular dystrophy patient
By Sarah Crooks Clancy
sclancy@thetowntalk.com
(318) 487-6419
Doctors didn’t give Julie Ogden much hope. So, for the last 16 years, this 37-year-old research nurse watched as a rare form of muscular dystrophy slowly moved from her lower legs to her torso. Then to her hands. And now, to her neck.
She changed jobs. Moved in with her parents. And, stopped driving.
But thanks to a little Internet research, a few e-mails and friends in high places, Ogden is looking at the future in a new light. Here’s why:
Question: What were your first symptoms?
Answer: "I noticed I was unable to ski or skate, or stand on my tiptoes, really. I just noticed I was weaker."
Q: Did that mean anything to you at the time?
A: "At the time, it didn’t. I guess I could say I was really diagnosed at 21 … we really started to notice that I was walking funny. I started with walking braces on my feet. Then I went to a cane and braces. Then I went to a scooter and braces. Then, the wheelchair. I’ve been permanent in the wheelchair for five years."
Q: What was the initial prognosis?
A: "The doctor said I had a type of muscular dystrophy, but they weren’t able to identify it until 1997. So, he pretty much said, you’ll continue to get weaker until you can’t move."
Q: What type of muscular dystrophy is it?
A: "This is a disease that’s found a lot in Jewish people, Japanese people and me. They’re finding more people who have it in America now, but it’s called hereditary inclusion body myopathy. One in every 1,500 Jewish people carry this gene and have a one in four chance of getting this disease."
Q: When did you find out about this new gene therapy?
A: "About six months ago, I was looking at the new data that’s come out on the Internet … and saw an article written by a Japanese doctor. In 2004, they identified the gene that’s mutated in me. It was just one single gene."
Q: What did you do next?
A: "I e-mailed the doctor in Japan and he e-mailed me the same day. He said, ‘Yes, we’re working on this right now. Let me give you the name of another doctor in America.’ I e-mailed that doctor. He e-mailed me right away. He lives in Encino, Calif., and he has the disease, too. He knows everything about the disease, but he’s never been able to get a lot of funding …"
Q: What did you think would happen with those e-mails?
A: "I thought it was a shot in the dark. And in our first conference call, when I heard all these doctors saying, ‘We are so excited about this.’ They’re just putting everything else aside and working on this project. It’s amazing. It’s a miracle. I can’t believe it."
Q: When will you get the treatment?
A: "I should hopefully get my first treatment within the year. It will be a chemotherapy kind of treatment."
Q: How much will it cost?
A: "It’s going to be about $1 million for the treatment. We’re hoping to get grants from the Muscular Dystrophy Association and the National Institutes of Health. These doctors are doing everything for free, but the lab people aren’t, so we’re paying for biopsies and testing. That initial money is what’s going to be the big cost for me."
Q: How are you raising money?
A: "I’ll never be able to raise a million dollars unless Oprah comes over and says, ‘Here you go.’ But hopefully we’ll get a good start with it and the grants will come through. This benefit? It’s just 15 of my friends from high school … who have put this together. It’s just amazing. We get something in the mailbox every day. A card from Tennessee that says, our men’s group is praying for you, cards from all over.
Q: How does that make you feel?
A: "I can’t even tell you. People I hardly know. One lady just donated $5,000. I don’t know her. And she just did that. It’s not even the $5,000. My aunt’s beautician in Oklahoma gave $10. It’s people like that coming out and doing these things — I could never say thank you enough. Money is good and I’m happy people are sending in money, $3, $10, whatever — but the prayer part is the part I think God is hearing. I think he’s made all this happen.
Q: What do you hope will happen with the treatment?
A: "My hope, of course, is to walk again. But, I hope that it will stop the progression. If it stops the progression … then I can actually grow some muscle back that I’ve lost. Damaged muscle I might not get back. But my hand muscles are the ones that are going now. And if I can stop the progression, then the hand muscles I have will grow back. And if it helps my muscular dystrophy … every other patient that has muscular dystrophy that has a one gene mutation might be helped."
Originally published February 17, 2006
copied and pasted from thetowntalk.com
Julie’s e-address is:
julieannaogden@yahoo.com
Donation information provided in Feb 5th’s posting:
Julie Ogden, THS Class of ’87
THS 88 on the Web 