Please take a moment to read this post…it is a “request for help” and is a very important message from my friend Jason Gordon (one of the directors of Kick For A Cure.) I will be contributing and I hope you can as well.
Background
As you may know by now, my wife Helena & I have a nephew named Dusty who has been battling a very serious genetic disease called Duchenne Muscular Dystrophy (DMD). To better help you understand the impact of DMD, I will provide you just a few brief facts:
- DMD affects approximately 1 boy for every 3000 born (regardless of race), and is the most fatal genetic disorder that exists
- There is currently no cure for DMD, although recent ground-breaking research is providing significant hope
- Most young boys who have DMD do not live past their teenage years
- For comparison, DMD is basically the childhood version of ALS (Lou Gehrigs Disease)
- For more information about DMD, please visit website
The Event
In 2005 & 2006, we threw the first 2 annual Kick For A Cure fundraisers and raised over $70,000 towards DMD research. In 2007, we created a 501(c)(3) Non-Profit Organization and “re-tooled” the organization from the ground up. We now have a Board Of Directors (visit here for details), along with a new Tournament Director and Event Committee. The next Kick For A Cure will be held on June 21-22, 2008 (in 45 days). I will very briefly summarize the event, but encourage you to visit www.kickforacure.org for more information. The event will feature:
- A 6 vs 6 Soccer Tournament featuring 140 Teams from all skill-levels, age groups, and genders (including co-ed teams)
- A “FunZone” that will provide a “festival-like” atmosphere to enjoy in between soccer games
- A “Vendor Village” showcasing local vendors & merchants
- Celebrity Appearances & Live Music
- Trophy presentation ceremony
- Heavy media coverage “leading up to” and “during” the event
How Can You Help?
My request of you is very simple…PLEASE HELP SUPPORT THE CAUSE! Please trust that I wouldn’t ask you for your support if it wasn’t extremely important. You can provide your support by doing the following:
- Forming a soccer team (or helping us find teams): (remember all skill levels can participate). Information on how to register is under the “Tournament” page (for more information on the tournament, please call Gerhard Neuendorff (Tournament Director) at 858-354-2349)
- Volunteering your time at the actual event Visit here for details on how to become a Volunteer, or call Jane Petro at 619-300-0415.
- Helping to locate Event Sponsors (visit or call Jason Gordon at 619-200-8031)
- Helping to locate Vendors who would like to set-up a booth in the “Vendor Village” (these Vendors will benefit by having a platform to display their product or service amidst heavy foot traffic (3,000 people expected in attendance throughout the weekend)). Vendor information or call Lisa Freedman at 619-278-9436
- Donating (and/or encouraging others to donate) to the cause (look on left margin) for a Donate link
- Helping us reach the Media (if you have contacts in the media, we would love their help in spreading the word about Kick For A Cure!)
- Understand this disease — we have provided a short video on the website that will help you understand the terrible impact of DMD (warning: the video is very powerful). You can watch this short video (called The Duchenne Timeline)
- Visit the website: Spend at least 10 minutes of your time (preferably within the next 24 hours) and familiarize yourself with the event, the charity, and the cause. That website (once again) is www.kickforacure.org
- Spread the word to others to visit the website and devote a minimum of 10 minutes reading through it (the sooner you spread the word to others, the more impact it will have on the event)
Final words:
You may remember Dusty from our wedding (if you were there). He was the cute little blond (4 year old) ring-bearer who proudly marched up the aisle and delivered the rings while the entire audience smiled, pointed, and “aaaaahed.” Here we are 10 years later…Dusty is now confined to a motorized wheelchair, receives constant physical therapy, medical treatments, etc., and has lost the ability to do most things “independently” that we all take for granted.
If there was a way we could personally help cure him (donating bone marrow, kidneys, other organs, etc.) without involving you, believe me when I say that we would. People just like us all over the world who have a loved one with DMD are forced to helplessly watch the deterioration process that eventually eliminates all functionality of every muscle in the body (including the heart at the latest stages). We watch charities like the Muscular Dystrophy Association spend millions of dollars each year sending these kids to camps, buying wheelchairs, and arm-braces. Although those gestures are nice, believe me when I say that when you have a loved one with DMD, you’d much prefer all of that money be spent towards finding a cure (we’ll gladly buy our own wheelchairs & arm-braces in the meantime).
We are doing our best to allow Dusty and others just like him to live “normal” lives. I’ve always tried to “give” much more than I “ask” throughout the years (and have supported many other charities as well)…please recognize the sincerity of my request and do everything you can to contribute to the success of KICK FOR A CURE. I won’t bombard you with additional emails or phone calls. It is ultimately up to you to choose whether to help us from this point forward.
Thank you in advance for your support, understanding, and friendship. Helena & I greatly appreciate it.
Respectfully,
Jason (& Helena)
The Lyons Den 
May 10, 2008 at 7:26 am |
Hi there,
Wonderful event that you are doing…I am a friend of Neil’s and know Dusty. He is a great kid. Thank you so much for helping – you are helping all of our boys.
May 26, 2008 at 11:27 am |
Here is a great opportunity for soccer moms and dads to have fun with their family and help a great cause at the same time. In addition to creating an awareness for their children and contributing to something real and necessary, the days are filled with tons of fun experiences. The KFC Board goes to extreme lengths and lots of detail to make this event successful for not only the players, but siblings, and other family members.
Come and have a ball and do something great at the same time!