The SMARDy Pants 40 miler is THIS SATURDAY! Our group is riding to raise money for 1) SMARD research and 2) a wheelchair accessible van for Nate. Our family simply cannot express how grateful we are for the generosity and support we have been shown for this ride. Thank you so much to every donor and supporter and all of the volunteers who have made this happen! These funds are going to change Nate's life.
We would love to see you on Saturday! Our family will be at Lincoln Park in Los Altos at 11:00 to say hi to all of you and welcome back our awesome riders (we're expecting them back around 11:30). Nate would love to meet his fans. You'll also have a chance to get a SMARDy Pants t-shirt for a small donation.
P.S. It's not too late to sign up for the ride! You can continue to get sponsors for your ride even after Saturday, so please join us. More info on the ride itself here.
I know we have been MIA for the past few weeks. We have been busy-busy-busy with a million different things, not the least of which is...
A MOVE DOWNSTAIRS!!!
The stars finally aligned and we were able to get a downstairs unit in our apartment complex. Turns out a move downstairs is more work than a move cross-country. We are still getting settled but we love not having to battle the stairs everytime we leave the house. The new apartment is pretty close to the one we were in before except for this time we hit the architectural jackpot with a 1982 original partition wall blocking off half the front room! On the bright side we are one step closer to getting Nate his power wheelchair, and that is worth all the dust bunnies that have already found a home in this thing.
"I see trouble!" (While playing with an ambulance)
"I love you, airplane." (I am still waiting to for him to say that to me.)
"Delicious!" (While getting a g-tube feed)
"I see taco truck!" (He really did see a taco truck, but how did he know what it was?!)
And my personal favorite, "I see a toilet, yes I do!!!" (No explanation required)
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 an important cause.
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 on Fundly. Recruit a few people to sponsor your ride you will be all set. Click the "Become A Fundraiser" button to get started.
If you don't want to ride, you can simply donate. If you can't donate show SMARD research your support by clicking the support button (it's free!) and spreading the word.
The primary goal of this ride is to help raise money for SMARD research. This year we will also be using a portion of funds raised to help Nate get a wheelchair accessible van.
Your support is appreciated so much. Become a donor and/or supporter on Fundly and help us spread the word about Nate and SMARD.
Thanks for all your support and Ride on!
P.S. If you want to donate but you're shy, just click theANONYMOUSbutton on the donation page.
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 lift your arms, hold a crayon, or even raise your head.
- 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 for these kids. SMARD is the rarest of rare diseases so there is very little information about it out there, but the gene that causes SMARD has recently been discovered and treatments are being researched by a handful of doctors and scientists throughout the world. The Jackson Lab is the only place in the US that we know of where significant SMARD research is happening.
Earlier this year, a conference was held in the Netherlands that was the first of its kind focused on SMARD research. The fact that there was enough interest to have a dedicated meeting on SMARD is extremely exciting. The conference established important relationships between the Jackson Lab and European researchers and they are going to start working together to speed up their research.
At the office at Jackson Lab. They care a lot about these kids. There's Nate on his bike!
Meet Dr. Cox and Dr. Soundararajan from the Jackson Lab. They are giving us hope for a cure! You can read more about them and their efforts here.
Because of the rarity of this disease, nearly all of their research dollars are coming from friends and family of those affected. It would mean so much to our family and all of these kids fighting SMARD if you'd consider donating to the Jackson Lab. You can easily do so here.
Below is a video made specifically for SMARD families to keep us informed about their research. It's long and fairly specific but I'm posting it here in case any of you are interested/scientific geniuses.
Now that Nate can identify most letters of the alphabet, I'm attempting to teach him that there is a sound assigned to each letter. This concept has not yet been grasped.
Mommy: D. Da-da-da-da-Daddy.
Nate: Da-da-da-da-truck.
Mommy: No, truck starts with T. Ta-ta-ta-ta-truck.
Nate: Ta-ta-ta-ta-Grandpa.
Mommy: Grandpa starts with G. Ga-ga-ga-ga-Grandpa.
Nate: Ga-ga-ga-ga-airplane! Ga-ga-ga-ga-pumpkin!
