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What is SMARD
SMARD is a life-threatening motor neuron disorder. Symptoms of SMARD are commonly seen within the first six months of life and many of these children will not live to see their first birthdays. A life with SMARD means:
- Having little to no control over your legs and feet.
- Weak muscles throughout your body making it difficult to raise your head, lift your arms or even hold a crayon.
- An inability to breathe due to a paralyzed diaphragm. Without a trach and ventilator a SMARD child would not be able to live.
- Deformed bone structure and pain especially without proper therapy.
But there is hope and you can help. The gene that causes SMARD has recently been discovered and treatments are being researched.
Why We Ride
Two-year-old Nathaniel Green was recently diagnosed with SMARD and has been through a lot this year. He is bright and happy but has no use of his legs which makes it very difficult to explore his world or leave the house.
He will be getting a power wheelchair soon and will finally be able to explore the world around him but without a way to transport the wheelchair, he's still stuck at home. We are tyring to raise funds to get a wheel chair accessible van.
Please help us make sure this little boy gets to leave the home.
Our long term goal for the ride is raising funds to support SMARD research. Since there are so few cases of SMARD, all research funding comes from family and friends of those affected. Be a part of our community and help these kids get closer to their dream of a cure. Please visit www.smardypants.blogspot.com to learn more about Nathaniel and SMARD.
The First Annual SMARDy Pants Ride
On October 20, 2012, we will hold the first annual SMARDy Pants Ride. This will be a low key affair that just about anyone can complete. The route will begin at Lincoln Park in Los Altos and head up to the Pulgas Water Temple on Canada Road in Woodside. Returning to Lincoln Park will make for a pleasant 40 mile route for a wonderful cause.
We will gather at 8:30am for a 9am ride start. The route is mapped on MapMyRide.
The long term goal of the SMARDy Pants Ride is to raise funds to find a cure for Spinal Muscular Atrophy with Respiratory Distress, SMARD.
Don't want to ride? Don't worry, you can still donate without entering yourself in the ride.
How Can I Help
We would love to have you ride with us. The entry fee for the ride is $100 but this is expected to be fulfilled through your simple fundraising efforts. Recruit a few people to sponsor your ride you will be all set. Click the "Become A Fundraiser" button to get started.
If you can't donate, then click support, "like" our page and get the word out!
P.S. If you want to donate but you're shy, just click the ANONYMOUS button on the donation page.
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