Thursday, July 7, 2011

Join Team Dean Machine!

We're walking! For Dean and everyone else who is affected by Prader-Willi syndrome. Read below about how you can be a part of it!
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You can mess with me, but don't mess with my kid. When Dean was born on April 28, 2009 and couldn't move, cry, eat, or have enough energy to stay awake, we had no idea what the future held. But we knew that no matter what, he was ours and we would fight with everything we had to give him a good life. We are fortunate that we found out about his diagnosis of Prader-Willi syndrome at such a young age.
We work tirelessly with Dean to achieve his goals in therapy, but his very low muscle tone holds him back. He faces his daily challenges with a smile, though, and people are drawn to him. One day, Dean's brain will begin to trick him into thinking he is hungry all the time. And he will never feel full. We dread that day.
The answer lies in science. The Foundation for Prader-Willi Research in joint effort with the Prader-Willi Syndrome Association has developed a research strategy to accelerate the science of PWS. To help fund the plan our family is excited to be hosting a walk-a-thon.
We hope you and your family can join us for this healthy happy walk and to reach our international goal of $500,000. Our personal goal is simply to raise an absurd amount of money. I don't know what that amount is, but let's just blow this thing out of the water!
If you are able, see attached details to register for the walk, create a personal fundraising page, or make a donation. If you can’t join us, know we continue to be grateful for your support. Love & gratitude, Ali and Bob Shenk

ONE SMALL STEP for PRADER-WILLI SYNDROME WILLIAMSBURG
Saturday, September 24th, 2011
8:00am Gathering, 9:00am Walk Begins
Raffle to Follow
Waller Mill Park, Route 645, Airport Road, Williamsburg, Virginia, 23188
2 mile wooded trail suitable for baby joggers and wheel chairs


Walk with Us!!
Simply join us for a healthy walk through the woods in the fresh autumn air. Enjoy trail Mix, Virginia grown apples, raffle, games and good conversation. Registration is free! To help us anticipate the number of walkers, please register at http://onesmallstep.fpwr.org/va/williamsburg . Click on “Register Now” and complete information.

Walk and Help Raise Money! It’s Quick and Easy!
Create your own personal fundraising page at http://onesmallstep.fpwr.org/va/williamsburg . Click on “Register Now and Create a Page”. Write your message and then invite your friends and family to visit your page, make a donation, or create a fundraising page of their own. Paper Pledge sheets are also available. Click on “Downloads” located under “Walking Event Details” to print a pledge form.

Can’t Make it to the Walk?
You can still create your own personal fundraising page at http://onesmallstep.fpwr.org/va/williamsburg . Then set your own date, time and place to walk. Ask friends to join you!

Make a donation!
Go To http://onesmallstep.fpwr.org/va/williamsburg . Go to “Donate to a walker” and type in “Dean Machine." If you would like to send in a check, email me at acfshenk at gmail dot com and I'll get it to the right place!

Prizes for Fundraisers!
Raise (or donate) $40 and receive a free One Small Step T-Shirt and Raffle Ticket. For every additional $100 you raise, you earn another ticket and another chance to win. Win prizes like 100 Instant Lottery Tickets! You do not need to be present to win, but must set up an event page.

International Grand Prize!
For every $500 you raise by August 20th, earn a chance to win an xBox360 Console with Kinect!

Join us overnight at THE GREAT WOLF LODGE on FRIDAY, SEPTEMBER 23, 2011!
-One Small Step for Prader-Willi Syndrome participants and donors are eligible for the special event rate of
$149/night (Regularly $289)!
-Special rate is for the Family Suite and includes 2 queen size beds, sleeper sofa, microwave, mini refrigerator,
and up to 6 Water Park passes. Maximum of 6 persons per room.
-No pets. Non-smoking facility.
-Reservations must be made by August 23rd to guarantee group rate.
-Additional night stay at group rate of $149 is available; inquire when making reservation.
-Cancellation must be 3 days prior to stay for full refund.
-Check out is 11:00am. Access to the water park is allowable for the full day. Locker rooms are available.
-To make reservations, go to http://www.greatwolf.com or call 1-800-551-WOLF. Enter Promo Code: 0911ONES

Let me know if you have any questions! I'll try to answer them myself or can send them on to someone who will know. :)

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