Dear Friends, Family, Followers, ANYONE WHO READS THIS BLOG,
One of my daughters best friends,
Gwendolyn Strong, is the same age as Samantha, 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. She loves to play with stickers, watch Sesame Street and dress up like a princess. Samantha and Gwendolyn have playdates and we are so hopeful that one day, Gwendolyn will be able to run around with Samantha. Researchers at UC Irvine are 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 started yesterday and ends on 1/22/2010.
Please take a few minutes to watch this video to learn more about Gwendolyn and the Chase Contest:
Gwendolyn Strong VideoImagine 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 dystrophy's, 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.
How can you help?
It is ridiculously simple:
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!
And to help even further, please forward this post on to your friends or if you have a blog, do a posting on Gwendolyn. I really dislike forwards and spam emails, but this is personal to me and I am going to do whatever I can to get the word out. This is an effort sheerly driven by people voting: the GSF needs every single vote it can get.
Samantha loves to play with Gwendolyn. She loves to hold her hand and show her toys. I'm looking forward to explaining to Samantha why Gwendolyn doesn't have to wear a breathing machine anymore ("she's cured!") instead of giving her the opposite devastating news. And I want to see Gwendolyn's parents, Bill and Victoria Strong, get a well deserved break from the constant monitoring they have been doing for over 2 years straight now! So, please, please, please, PLEASE vote and spread the word to every person you know.
Please don't ignore this and think your vote won't count. As of right now, GSF is #5 out of 100. We have a little less than a week to make it to the top!
Thank you so much and please email if you have any questions on how to vote!

-The Fallon Family