This time of year, PPMD has many activities going on that help support the work that we do throughout the year and on an ongoing basis. It seems as school starts up in September, we kick into a busy time of year too.

With a constant flow of information in our monthly newsletters, a legislative agenda, four marathons (and registration deadlines), a holiday appeal, and now our Coach To Cure MD opportunity… when is enough, enough? When have we reached out to as many people as we can? And when does it become too much? It is a constant question that we ask ourselves.

My feeling is this… not everyone can donate a large sum of money to an organization to help it move forward. Not everyone has the time, resources, or energy to throw a fundraising event. Not everyone can run a marathon. But I believe that EVERYONE needs to do something. So the more opportunities that PPMD has going, the more likely we are going to find a fit for everyone and for everyone’s family to support.

PPMD is working on behalf of everyone’s son… not just for one boy or two boys, but for ALL of the boys. And ALL of the boys deserve as much energy, persistence, and support as we can put out there.

In today’s economy more than ever WE – the Duchenne community – are going to be the people who continue to drive research, to push treatments, and keep Duchenne on everyone’s radar screen. This is why I believe it is up to ALL of us to do as much as we can, both physically and financially to support the good work that is out there.

I hope that each of you reading this post will choose to support one of our efforts. Whether you register to run a marathon, or email your entire address book about Coach To Cure MD, or text the word CURE to 90999 to make a $5 donation– we need you to help us with these endeavors.

So really- when is enough, enough? I say it won’t be enough until the day there is a cure and we end Duchenne.

Kimberly

Coach to Cure MD

Run for Our Sons

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Amen to that Kimberly and I second everything that you said and I believe that with all of our efforts the day will come when we do end Duchenne forever!
Kim,
You are such an amazing advocate for us! Pat has lived (and will never forget) our hell and yet, she and you (and Ryan, Will, Sandra, ALL of PPMD) live it through your love for each of our boys every day. What is amazing is that you don't have to! So, Thanks!
I agree that there is never enough! I often look to pediatric cancer, they can now cure (if caught early) 70% of all pediatric cancers...why, because they never met enough...they still don't. AND WE NEVER CAN EITHER.
There is another toll, on us, and you, Ryan, Pat, families...everyone. That is the emotional toll. I think that is why some families keep a distance, it is hard to think about and consciously do for DMD, we have to do it on a personal level every moment of everyday and to take that risk, that toll to another level, is hard. I understand that very well. For me, being involved and being informed is my way of doing something when I can't just be super mom and fix it. I am not as involved as some, I know, and for those who are, I am eternally grateful and for those who can't risk the emotional toll, I say thanks for being there for your son, he needs your love.
But to answer your question, UNTIL THE DAY WE HAVE A CURE THERE WILL NEVER BE ENOUGH ACTIVITY, EVENTS, TALK, FUNDRAISING, TRAVELING FOR THE BEST CARE....ANYTHING. I pray the day will come SOON when we can all rest...but then again, soon was yesterday!
Lori
Completely agree with your there Kimberly. I don't know what it's like in the States, but over here breast cancer is the big one, and the charity has managed to get their hooks into every avenue conceivable.....

When you walk around the grocery store you are bombarded by Pink packaging signifying that part proceeds will go to breast cancer, you can still buy the calendars, still buy the pins, still buy the wristbands....... now tonight I hear that if you buy a pink mattress, part proceeds will go to the cause. Don't get me wrong, this is fantastic, especially if your life has been touched by this disease, but you do often wonder how on earth they do it. The point is, they are not going to stop raising money until they fund a cure, and they are going to collect money from as many different sources as they can.

I know that DMD is different as it does not affect as many people as breast cancer, but it seems to be a shame that more companies do not get behind the lesser known conditions, and help them to get a bite of the apple.

Ironically my husband is a body builder in his spare time, so in a house filled with all the equipment that comes with caring for a boy with DMD, you will also find piles of body building magazines, supplements, promotional flyers and the odd dumbell holding open a door. I recently started writing to all of these companies (magazines and supplement manufacturers), as I thought it would be great if the companies that made so much money out of helping people gain muscle mass gave a little back to the boys that would give their right arms just to have muscles...........

To date no reply, but I will keep writing until one day some-one gives in! And given that I have so many companies and so many flyers in our home, its a lot of writing, but something that I do whenever I have the chance (so for any of you in California, lets try and get Arnie in on the cause).

And for those people that don't feel comfortable writing letters, or don't have the cash to donate to every event being held, I think its really important to remember that everytime you educate some-one on your childs condition, you too are helping the cause. I have had a couple of experiences where I have shared our families story with a stranger, who has then called MDA and made a donation (we know this because a couple of the donations were quite substantial and it turns out I had been talking to a CEO or financial controller). They did it without being asked, because something I said struck a chord, and left them feeling compelled to not only learn more, but offer their support financially.

A lot of our friends have become used to me "hitting them up" when I have a fundraiser, and for those that roll their eyes (or try and cross the street when they see me coming) I explain to them that if I have to bury my son, I need to be able to look myself in the mirror when that day comes and know that I did everything within my power to try and stop this disease, not just for my son - for all our sons. Theres not a parent on this earth that can argue with that logic so they inevitably find themselves once again supporting the cause.

As the years progress and we find ourselves with more (or less) free time, we all have different things that we do to satisfy ourselves that we are doing everything we can to win the war, but I guess that is the bottom line. As long as we do something.

Edmond Burke summed it up so well when he said "all that is necessary for the truimph of evil is that good men do nothing"
I'm with you Kim... We are gearing up for our 2nd Annual Bull and Oyster roast. Fundraisers are hard work...can be draining on me physically and mentally...I hate asking over and over from people to donate, but I do. One look into my son's eyes tells me I have to give it my all ... he gives me the strength I need. Maybe it's guilt, maybe it's the hope that drives me onward. Either way, for the past 4 years I have lived with this motto: Why be given this disease and not do anything about it?

Wish us luck in a few weeks. Our goal is to bring in $40,000 for research.

www.markcarson.us
Being in the "can't donate a large sum of money" category myself, I've been looking for other ways to make an impact.

I like the opportunity that the Coach to Cure MD program has presented. This has the potential to gain a lot of attention for our cause. www.coachtocuremd.org

I sent one letter to my alma mater asking for their participation in the program, and they agreed. I asked the most popular website tracking the football program to donate an ad. They did. I'll post on their forum during game day, drawing attention to the cause. I'll send emails on the program to my friends from college, and ask them to do the same.

Hopefully some money comes out of it. At the very least, some awareness will be built, and maybe those people will donate next time, or support us in some other way....
I am so excited to read everyone's thoughts and see that you all feel as I do that we - you and I and our community- have to come together to move things forward.

You know as I type this message I notice that to the right is a gray box that says there are 936 members on the community site. I was just struck by the thought that if each of those 936 members texted the word CURE to 90999 to make a $5 donation, and then forwarded it to a dozen people in their adress book asking for the same, we could raise over $50,000 by the end of the day. Heck we forward jokes and inspirational emails and other things... why not do the same with this message. I know it is a tough economy- and as a nonprofit we are going to truly feel that impact. So we have to think of ways to keep things moving.

I just can't stress enough that Duchenne isn't a sit back and wait kind of problem... if we are going to beat this thing we are all going to need to participate. Thanks for all of yoru comments and ideas and help!
I'm just a simple Texan, but this is a trick question, right? It's NEVER enough! My philosophy is that if your friends aren't annoyed by your asking them for money, you haven't asked them enough!

I really have to commend Keith. You took Coach to Cure MD and ran with it! Nice job! I think that Keith is the perfect example that you don't have to have a lot of money, you don't have to have a lot of high-level contacts, you don't have to have endless amounts of energy...but you can still fight back against Duchenne!

The beautiful thing about Coach to Cure MD is that the possibilities are endless. It is like a blank canvass that you can color up and build upon any way you like. Some of us are Picasso's, some of us are paint-by-numbers. That's OK. Anyone can use it as an opportunity to spread awareness and raise money. Remember the coaches are behind you!!

We have this opportunity for 3 years, so if you can't pull something off this year, PLAN FOR NEXT YEAR!!!

Here are some examples, but you can use the opportunity however you want:

Ridiculously simple:
1) Call or email 2 DMD families you know and make sure they know about Coach to Cure MD. Ask them to contact two other families and so on. We need to spread the word because some people still have not heard!

Simple:
1) Contact 5 or 10 friends. Ask them to send out an email or make a phone call to ten of their friends to tell them about Coach to Cure MD and to make a $5 donation by texting "cure" to 90999. You don't even have to ask your friends for money! But this way they get to expand outside of your "circle" and spread the word about DMD. Most people would be willing to do this.
2) Post something on a college sports blog about Coach to Cure MD.
3) Call or email a local news station and tell them about it.

Moderate:
1) Plan a party at a local sports bar. Contact the manager and ask if they will donate a portion of the sales to Coach to Cure MD if you bring in a certain number of people.
2) Plan a tailgate party/rally at the stadium. Invite your friends and family, and/or other local Duchenne families.
3) Contact a local sorority or fraternity and get them on board. They could stand outside the stadium in a "fill the bucket" donation effort, hold a flag football tournament, etc.

Advanced:
4) Throw a huge party prior to the game. Contact the coach or their wife and get their endorsement. Have local merchants donate food (we like BBQ here in Texas...brisket that is), ask a local celebrity such as a sportscaster or sports figure to MC or be the guest of honor, invite the season ticket-holders, etc.

I see myself as a fairly non-creative type and I was still able to come up with a few ways to utilize this awesome opportunity. I'm sure others can do much better than me. Remember, everyone has something to contribute, strengths they can bring into play. Don't sell yourself short!

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