SMA

I received this email a few days ago and can't stop thinking about it, probably because I'm on the verge of bringing my own child into this world. One of my oldest friends, Sarah Paskin and her husband Mike, are friends with another young couple that have a beautiful daughter named Gwendolyn. I have watched Gwendolyn grow over the last few years via Sarah's blog, and am compelled to pass along this amazing fundraising opportunity. I've cut and paste Sarah's original posting because, as you can tell, she wrote it from the heart and as a result, it hits you in the heart. Please take a moment to do this simple act to promote funding for Spinal Muscular Atrophy.



Dear Friends and Family,


My daughter's best friend, Gwendolyn Strong, is the same age as Reese, and has a terminal illness called Spinal Muscular Atrophy (SMA). Children with SMA lack a gene in their DNA that keeps the motor neurons thriving: Gwendolyn's body is completely paralyzed, she breathes from a machine, and eats from a tube. Her mind, however, is completely normal and she's actually quite a spunky little gal. She loves to play with Reese and has an affinity for princess items :) Researchers at UC Irvine are really REALLY close to a cure for SMA, but they need funding to push it towards FDA approval. It is so exciting (yet frustrating) to know how close it is!

JP Morgan Chase Bank has committed to donating $5 million dollars to non-profit organizations, $1 million of which was already distributed in December. Through a Facebook voting system, the top 100 non-profits were awarded $25,000 in cash. The Gwendolyn Strong Foundation was one of these winners (yippeee!), and 100% of the funds were sent directly to UC Irvine's SMA research team. Next up is the final round of voting for the BIG prize: $1,000,000. One million!! This voting is all done through Facebook, and it starts tomorrow: Friday, January 15th, 2010.

This video sums it up: Gwendolyn Strong Video

Imagine this: $1,000,000 towards SMA research could actually end this disease. Not "get the ball rolling" on research, not "hope for a cure," but actually end it. And, most importantly in my eyes, it could save Gwendolyn's life. The research that is sooooo close to FDA approval is one that could affect babies who already have SMA (like Gwendolyn), and could completely remove them from symptoms. Can you imagine Gwendolyn running into our playgroup and giving the kids high-fives and hugs without a breathing machine? I CAN!!!!!!!

Here are some facts:
Dr. Kierstad (UC Irvine) has dedicated his life to spinal cord injuries. He has already successfully performed a lab experiment on mice that allowed the previously-paralyzed animals to literally get up and walk. He is now focusing on SMA research, which is closely related to spinal cord injuries, muscular dystrophies, ALS/Lou Gehrig's, Parkinson's and Alzheimer's diseases. It is his belief that a groundbreaking surgery (so close to FDA approval!) could allow the body to re-build the proteins that are missing in children with SMA. That means Gwendolyn has the potential to be symptom free! Forever!
Money is holding back a cure. Other diseases, such as breast cancer and AIDS, have massive amounts of funding and research behind them, but "cures" are still unknown. The "cure" for SMA is just around the corner, but nothing can be done until the funds are there to continue the research.
SMA is the #1 genetic killer of children under two years of age, and 1 in 40 adults (unknowingly) carry the gene to pass it on.

I really dislike forwards and spam emails, but I am going to send out an email, Facebook posting, and blog entry EVERY single day while the voting is open (Jan 15 - Jan 22). It's really simple, just three easy steps (I'll list them in tomorrow's email once the voting is open). In turn, I ask that you do the same...post it on your Facebook accounts (or heck, create a FB account if you don't have one already!), your blogs, your email contacts, etc. This is an effort sheerly driven by people voting: the GSF needs every single vote it can get.

Reese wakes up each morning and asks to play with Gwendolyn. She loves to hold her hand and help wipe her mouth when it is wet. I'm looking forward to explaining to Reese why Gwendolyn doesn't have to wear a breathing machine anymore ("she's cured!") instead of giving her the opposite devastating news. So, please, please, please, PLEASE vote and spread the word to every person you know. Don't ignore me...I'll be stalking you all week :)

Voting has started! Here's how you do it:

If you're already a member of Facebook:
1) Click Here (you might need to log in if you've not already)
2) Click on "Vote for Charity"
That's it! It'll give you the option of posting on your status that you voted (do it!! with a message to your friends!!). How easy is that?!

If you're not a member of Facebook yet:
1) Click Here and sign up for a (free) account. 
2) Click on "Vote for Charity"
A box will appear that allows you to show your friends that you have voted. Even if you don't have any friends (yet), follow the instructions so your future friends will know!

It's so easy, it's so quick, and it's so important.
Sarah Paskin