Ryan & Jack Fight Back 5K Run
August 6, 2010 by CureDuchenne
Filed under Events, Featured
Ryan & Jack Fight Back 5K Run and Children’s Fun Run
Sunday, October 03, 2010
8:30am start
Masons Mill Park
3500 Masons Mill Road
Huntingdon Valley, PA
The race will be on Sunday, October 3rd at Masons Mill Park and proceeds will go to Cure Duchenne. The address is 3500 Masons Mill Road in Huntingdon Valley, PA 19006. The race will begin promptly at 8:30am. Same day registration will be available from 7:30am to 8:15am.
Download the Registration Form here
In addition to the 5k race, there will be games for children, face painting, and a fun walk. Come join the fun and remember that’s it’s for a great cause!
Please keep in mind the 5K run is a trail course. Strollers/wheelchairs would not be appropriate. The Fun Walk is stroller/wheelchair accessible as it is a concrete path.
Registration is $25 when registering prior to race. It will be $30 for race day registration.
Anyone registering by September 12th is guaranteed a T-shirt!
To register, please Click Here
See registration steps below
If you have any questions, please contact Kristen Mull at kmull8(at)comcast.net.
Background on Ryan and Jack:
When Ryan was 15 months old we were concerned that he was not walking. The Intermediate Unit visited us and said he was fine so we thought nothing of it. At 18 months Ryan did start to walk but soon developed a limp and was not able to climb stairs. We went to see an orthopedic physician who did x-rays of Ryan’s hips, knees and ankles and again saw no problems. He then suggested a neurologist which didn’t make sense but we went as we wanted to find out what the problem was. The neurologist said he had weak leg muscles and ordered blood work – we still thought we had nothing major to worry about.
On June 27, 2008, we were getting ready for our daughter Katie’s 6th birthday party when the physician called to say that Ryan has high CPK levels – over 30,000. He said an average person has a CPK of 200 and that this along with his other symptoms indicated Duchenne. We did not tell anyone that day as we did not want to ruin Katie’s birthday. Soon after it was confirmed through genetic testing. The physician suggested we have Jack tested, and because we wanted some good news, we did – we thought that Jack is so much stronger than Ryan was that there was no way he would have Duchenne as well – we were wrong.
We are worried about the future of our boys, our daughters, where we will live, and how we will get through this. We are completely overwhelmed with all that we have yet to go through. We should be saving for college for our son’s, not worrying about saving to make our house handicapped accessible! We should be worrying about their schoolwork, what sports to put them in, and their future – but not about how limited their future is!
One line we always read that gets me, from ‘Irish Marriage Blessing’: “may you live to see your children’s children”. I look at it every day and it makes me cry for this will not be possible unless we find a cure.
We do have a great support group of friends and family that have truly carried us through the past 2 years.
To register, please Click Here
Steps to register:
- Click on the Orange “Get Started” button or “Register For Event”
- Select “Ryan & Jack Fight Back 5K Run”
- Select “Yes register online now”
- Continue through rest of the registration
If you have any questions, please contact Kristen Mull at kmull8(at)comcast.net.
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Second Annual Golf Ball Drop and Fall Festival
July 23, 2010 by CureDuchenne
Filed under Events, Featured
Second Annual Golf Ball Drop and Fall Festival to Benefit Cure Duchenne
Saturday, October 16, 2010 – Rain or Shine
10:00 am to 5:00 pm
Quakertown Airport & Robert Fowler Aviation, Inc.
2425 Milford Square Pike
Quakertown, Pa 18951 (parking will be across from the airport)
Cure Duchenne is having a Golf Ball Drop (Drop for Duchenne) and Fall Festival to support Duchenne Muscular Dystrophy (DMD) research and education. We are families active in Pennsylvania because we have a son, relative or friend that has been diagnosed with Duchenne Muscular Dystrophy and have chosen to take a stand in the fight against DMD.
Numbered golf balls are being sold in advance of the event for $10.00 each. At 4:00pm all 2,000 balls will be lifted into the air and positioned over a whole in one and dropped. The first ball that lands in or closest to the hole wins first prize of $1,000.00. Should there be more than one ball that is closest to the hole the prize will be shared. Second prize will be $500.00, third, fourth, fifth, sixth, and seventh prizes will be $100.00 each.
There will be crafters/vendors, food and refreshments by the Milford Township Fire Company and the Quakertown Airport Café, Live Music and a DJ (come out between 1 – 3 for some Country Line Dancing), Antique Airplane Exhibit, Airplane Rides, Animals Rescues, Games for the kids, tons of Raffle Items, Face Painting and scarecrow making and pumpkin decorating contests with prizes.
AND LAST BUT NOT LEAST THE GOLF BALL DROP TO TOP OFF THE EVENT!!!!!!!!!
Donating auction items (goods or services)
- Being a Sponsor to help with the costs of the event.
- Attending the event to show your support.
- Buying a ticket for the Drop and take a chance to win!
Call Donna Doyle at 215-345-7421, with any questions or if you would like to purchase tickets.
Numbered tickets will correspond to the numbers on the golf balls
Any vendors interested in participating, in lieu of a registration fee, we are requesting an item that can be included in the raffle.
Also, keep in mind – your gift is tax deductible. You will receive a donation letter from Cure Duchenne to be used for tax purposes.
For more information, please contact us.
2010 Climb to Cure Duchenne Raises over $250,000 for DMD Research
June 22, 2010 by CureDuchenne
Filed under Events, Featured
Take a good, long look at the above photo. What do you see? You might see a man on a mountain top. You might see the snow. You might see the clouds in the background.
However, if you look a bit deeper, you’ll realize there is a story behind this picture. Paul Miller, the man seen standing triumphant with ice ax in hand, is the father of a boy with Duchenne muscular dystrophy. This picture was taken at the summit of Mt. Shasta in Northern California at 14,162 feet in below freezing temperatures.
This picture is merely a symbol of the dedicated parents and DMD advocates from around the country that participated in this year’s 2010 Climb to Cure Duchenne: Pick Your Peak.
The climb consisted of literally hundreds of people all over the country who chose to assemble a team, pick a peak, and climb on June 19th to raise awareness and money for a cure for Duchenne muscular dystrophy. It was an amazing event for everyone involved.
The climb was successful in two primary and extremely important ways. First, more than ever, people from around the country were introduced to Duchenne muscular dystrophy and learned about the cause. Because of this event, there are many people who have signed on to help find a cure.
Second, this event raised more than $250,000 that will go towards research! In fact, Cure Duchenne will allocate the funds to Dr. Chamberlain, of the University of Washington, and Dr. Stephen Tapscott, of the Fred Hutchinson Cancer Research Center, who have identified a promising gene therapy that could lead to a treatment of all boys afflicted with DMD. This is very big news!
Finding a cure to something as big a DMD is going to require massive action. It’s going to require getting out there and making a difference. It’s going to require doing for our boys what they can’t do for themselves.
Cure Duchenne is extremely grateful to all those who took action and participated in this year’s Climb to Cure Duchenne.
So when you look at a photo like the one of Paul Miller above, recognize that the struggle he underwent is nothing compared to the struggle our boys go through on a daily basis. For all those who want to see a cure found, join us in taking massive action and help Cure Duchenne!
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