I went looking for these two blog posts on the helpfightduchenne.com website, they were missing because spammers had taken over the wordpress blog. I found them on the web archive site, an amazing thing(another story). They are worth repeating because I just got a note form Betty and Debi thanking me for helping. Al and I separately posted to the blog.
I’m glad Bettie crossed a line!
I met Bettie several years ago. I personally think she is the best kinder garden teacher in the world! She taught my oldest son Ian, but it was at a teacher parent progress meeting with my youngest son that I began to see the depth of caring in Bettie’s heart. Hayden was meeting and exceeding many of his benchmarks and the meeting was moving to a close when Bettie looked at us and asked if she could ask about something that may be crossing a line. To myself at first I was worried that Hayden might have a bit too much of my DNA for his own good! She began to tell us about Grant and Tony as well as describe Ducheene Muscular Dystrophy. I was stunned. Bettie asked for help in the marketing of their Hope For The Holidays fundraiser. It was a week away and there was nothing we could do for that year, but next year to count us in.
I knew I was over my head so I went to Michel Keidel for help. Keidel is one of the most creative guys in the city. I can do the visuals & Michel could do the creative. We met early the next year. Grant is Terri’s son. Tony is Debi’s son. Bettie and Pat Furlong were both at this meeting and I admit it was one of the difficult meetings of my life. Pat has been at the point in Duchenne research and funding. She lost both her sons to DMD years ago when there was not even a standard of treatment. Some day soon there will be a breakthrough I can visualize Pat there. Pat walked Michel and I through the details of the decline and death of her two sons and how she has made this her life’s work to beat DMD. I still tear up when I think of this conversation with the sounds of Grant & Tony playing in the other room. It was also one of the most inspiring events of my life to experience the love and caring of these wonderful people.
Terri, Debi & Pat are amazing women. They are joined by hundreds of other parents that are fighting the same war. A day never goes by when I don’t thank God for my two healthy boys and I also say a prayer for all the boys!
I’m just a small part of this. I do visuals that I hope inspire people to give. Of all the mindless crap I have helped push off store shelves in my career, I take that experience to help raise the monies needed to get these new trial drugs into testing. For the last several years my clients, suppliers and employees have all stepped up. Every year we raise a bit more money. Research money does not grow on trees. So if you know of a giving soul or someone looking for a charitable event to reduce a tax burden, please pass this along.
And here’s mine, once again.
DMD & Me.
Back in 2007, my friend Al called me to ask a favor. He doesn’t do that often so I was more than obliging. Al child’s teacher, Bettie, needed help on a event that she was involved in, Al wanted to know if we could collaborate on a special project. I said sure, asked some initial detail questions and that was that.
So let me back up for a moment, my name is Michel Keidel, I am an advertising creative director for a downtown agency called CG. I have over 30 years experience in the Cincinnati advertising community. Al is Al lang of Lang Photography, a brilliant Cincinnati photographer, who I am proud to call my friend. We’ve done some huge national projects together, watched Reds and Bengals games together. We work well together.
So, Al calls back to tell me about what he knows about Duchenne Muscular Dystrophy, the scope of the project and schedules this meeting with two families on the west side of Cincinnati. Game on. So I thought.
I show up at the Alexander house, it turns out that I went to high school with Harry and was a couple of years ahead of Terri. I meet Bettie and Grant for the first time. Terri’s made up quite a spread of goodies, we wait for Al a couple of minutes with the usual small talk.
Al finally shows up and we sit down at the kitchen table and talk about Duchenne and how devastating it is. I literally knew nothing about Duchenne Muscular Dystrophy or MD for that matter. Terri, Debi and Bettie have done a great job of putting on a Hope for the Holidays Event and Silent Auction. Bettie’s does hand made invitations that are truly works of art, love and an amazing amount of labor. Terri and Debi solicit auction items for everywhere. They put on a first class event.
Two moms and Bettie and host of volunteers. They are amazing and They are amazing and courageous and so so strong. Harry, who is a local golf pro, also puts on a golf outing as well.
We listen intently. My heart literally breaks as they discuss this disease. They live with this daily. It makes me think that I am so lucky to have two “sort of” healthly kids. Duchenne literally wastes away muscle tissues of their boys. There is no cure, no consistent course of treatment, just families with their boys going up against the insurance and drug companies and a killer disease.
At first, I think they are dubious as to why Al & I are there. We explain that we only want to help. We can do things. We can raise awareness, build web sites, print up materials to help. We can use our creative talents to help. We don’t want anything. We want to give. I think they thought we were crazy. We asked where the money goes. Terri suggests that we meet with Pat Furlong of PPMD, go to her web site and learn. I went to the site when I got home that night after I hugged my kids and wife Linda, a little longer than usual. There was a meeting set up and a photo shoot set up to shoot the families and the boys at Al’s studio.
The meeting with Pat Furlong was life changing for me. Again it was at Terri’s house, at the kitchen table. Small talk lead to me talking about my Ellie and her muscle problems. They want to help her, but that’s not why we were there.
Pat tells her story with well practiced ease. It’s devastating, I’m tearing up right now just thinking about it. Pat lost both her boys to DMD. She describes to Al and me exactly what happens as the disease progresses. Our jaws were literally on the floor. But she is so full of hope. Pat’s been fighting this battle since 1994. She is known the around the world and here she is giving me the long pitch at a kitchen table in Cleves, Ohio.
Parent Project Muscular Dystrophy, is leading the way to find this cure. With no help from Jerry either. It is an honor to even have met Pat Furlong, let alone try to advance the cause. I sobbed on the way home.
The photo shoot the next week was the first time that I met Tony, well both families were there, so I got to meet everyone. It went well, Al shot everybody and then it was up to me to pull some materials together. After doing my homework at the PPMD site, we went to work. I usually sell coneys or checking accounts, easy stuff. This was painful but it had to be compelling as the meeting we had with Pat. It wasn’t about just the event but two boys, Grant & Tony. Help these boys. I knew what was going to happen to them and to their families it made my heart ache.
That first year, we did made a difference, I think. The print materials and site were impactful BUT it was these two families and Bettie that do the heavy lifting. The event at the Madison was packed, the video made us all cry. I got to say hi to Pat. They raised more money than the year before. Great. Except the work is not done.
This is our forth year in helping, Al and I got a late start, this year, but Terri, Bettie and Debi were on it as usual. Please give to this cause. Book a couple of seat at the Hope for the Holidays Event, give them something auction. They have touch my heart and I know they will touch yours if you let them.
As a side note, we are changing things up next year, please ask me how you can help.