Interview: Amy & Chris Martin & Their Involvement with Duchenne Muscular Dystrophy

The following is an interview with Amy & Chris Martin who have a son with Duchenne muscular dystrophy. Amy and Chris have been instrumental in helping bring about the UCLA DMD Research and Clinic. Take a moment to learn more about how and why they are committed to bringing a cure to DMD.

How long ago was your son diagnosed?
3 years ago 

What was your reaction?
Shock, confusion and terror….like a bomb exploding on our house. 

What led you to Cure Duchenne?
Friends introduced me to Stan (Nelson) and Carrie (Miceli). Then I started doing research on the web and came across CureDuchenne. I liked the name.

We met Paul and Debra (Miller) and really liked their approach to finding and funding viable treatments that may help this generation of boys. We also liked the fact that they were in Southern California. There was no need to reinvent the wheel and start our own foundation. We wanted to work together.

What made you decide to get involved in fundraising?
Fundraising is the only thing we can do! We are not scientists. We are not doctors.  We are parents who are very involved in our community and like to give back. When we needed help we got it because of that community spirit. Scientists need money and we can help. Why wouldn’t we?

You’ve done very well with Dealing for Duchenne Celebrity Poker Tournament. How did you get started with such a successful event? (What’s your secret?)
Both Chris and I are very active within our community and at our kid’s schools. We volunteer and coach teams and always help friends in need. When we asked people for help in putting together an event, we got it!  That’s what friends and people in your community are supposed to do for one another.

We feel very blessed to have such wonderful friends. I guess the secret is being a good friend, and also being able to ask for help. People want to help but you have to ask for specific things. No one knows what they can do, you need to tell them.

What would you say to parents who’ve just received the diagnosis?
First I would say, in the beginning it is okay to do nothing. To feel sad, angry, and depressed. It helped me to learn as much as I could about the disease and to also talk to my friends. I didn’t want to get involved in parent support groups. I wanted to live life in the present and do whatever I could to make a difference in my son’s future.  

Everyone handles it differently. There is no right way to grieve. It is a process and ours is especially difficult. It is a burden to live with knowing that your child is dying inside and that there is nothing doctors can do to prevent it. We are not equipped to deal with that.

I cannot explain how hard it is to live with this burden of knowing. It doesn’t get easier, but you do get better at it. Denial is okay sometimes. I do not blame or judge anyone who wants to go away and live life with their child and wait for scientists to find something that will help. Sometimes I want to do that and sometimes I take time to do just that! But I know that the science needs funding, and I have to help – it is the only proactive thing I can do to give my son a fighting chance.

What would you say to people looking to get started with fundraising?
Ask your friends for help! Think about who you know, what they may be able to do to help you, and then ask them. Learn about the disease process, the research being done, and think about why no one knows about Duchenne. Talk about it. Be honest with your friends.

I know that every parent in my situation would do the same thing because we all fight for our kid’s futures every day. We all want to give our kids the best chance at living a full life. I never knew how to throw a gala or charity event. I asked for help. I was honest in saying “I don’t know how to do this, can you help me?”

If you want to do something talk to your friends about ideas, ask them for help, and you will be surprised. CureDuchenne is a great resource and ready to help any parent that wants to get involved.

Any other thoughts you’d like to share with the DMD community?
People need to know what Duchenne is. I have been in the awkward situation of hearing about children in my community who are suffering from Leukemia, cancers, diabetes, and other childhood diseases.

Everyone feels so sorry and sad for them, and yet I want to scream, “I would give anything for a doctor to tell me that my son has an 80% percent chance of survival if we do a horrible (but life saving) treatment for 2 years!” I’d take even a 70% or 50/50 or anything!

Duchenne is a death sentence. So were AIDS, Cancer, Diabetes, and Cystic Fibrosis. If we can’t talk about how bad it is, we will never get enough attention or funding.

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Dealing for Duchenne Celebrity Poker Tournament Raises Over $200,000

This year’s “Dealing for Duchenne” Celebrity Poker Tournament was a smashing success! We had record numbers with over 450 people in attendance. The night’s event helped to raise more than $200,000 that will go towards UCLA DMD Research & Clinic. This is very big news for everyone affected by DMD here on the West coast and Southwest region.

Special thanks go to Amy & Chris Martin who chaired the event. Amy & Chris are experts at putting together an amazing team and making a perfect evening happen. Thank you to everyone involved!  

If you would like to donate to the UCLA DMD Clinic, please click here:

 

 Enjoy some photos from the evening:

Dealing for Duchenne Los Angeles: Celebrity Poker Tournament with Co-Hosts Anne Heche and James Tupper

On June 12th, CureDuchenne is pleased to have Anne Heche & James Tupper Co-Host our 3rd Annual “Dealing for Duchenne Celebrity Poker Tournament“.

Anne and James will be joined by others stars including: Mandy Moore, Molly Ringwald, Willie Garson, Josh Malina, Kevin Weisman, Michael Rapaport, Kelli Williams, Kevin & Bean from KROQ, and more!

See our Event Website for more details!

The event will be held at the Petersen Automotive Museum in Los Angeles starting at 6:30pm.

Because of the incredible support we’ve had in the last two years, the Center for Duchenne Muscular Dystrophy at UCLA is opening soon! Proceeds from this years event will help support this center.

As always, we continually support researchers who are actively seeking a cure to Duchenne muscular dystrophy (DMD).  Having a center here in Southern California will just be another stepping stone to not only treating families affected by DMD but also discovering a cure.

The evening will be full of activities including:

• Celebrity Texas Hold ‘em Tournament

• Craps and Black Jack Tables

• Silent and Live Auctions

• Opportunity Drawing

• Dinner by Wolfgang Puck Catering

• Cocktails by West Coast Beverage

To be an Event Sponsor or to Donate a Gift-in-Kind, please head over to our Event Website.

If you would like to purchase tickets, you can do so by clicking here.

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