I have been posting on my facebook account for a couple days this same link but when
*Sam and Julie* left me a comment asking for me to post this- I thought-
HELLO... Why didn't you think of that Kendra!
She knows a friend who's child is still alive but struggling with this horrible disease SMA. She sent out this email asking for help.
“Researchers at UC Irvine are really REALLY close to a cure for SMA, but they need funding to push it towards FDA approval. JP Morgan Chase Bank has committed to donating $5 million dollars to non-profit organizations and through a Facebook voting system, the voting for the BIG prize $1,000,000 (yes, one million) starts tomorrow, Friday, January 15th, 2010. We are asking that everyone go to the polls and vote for GSF so we can win and donate the money to end this cruel disease.This is important for one main reason, $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 the lives of children who currently have SMA. The research that is so close to FDA approval is one that could affect babies who already have SMA, and could completely remove them from symptoms. 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. It is his belief that a groundbreaking surgery could allow the body to re-build the proteins that are missing in children with SMA. 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.Voting is open (Jan 15 - Jan 22) and each person gets one vote per day. This is an effort sheerly driven by people voting: the GSF needs every single vote it can get. So, please, please, please, PLEASE vote and spread the word to every person you know.”
To vote, go to http://voteforsma.com/
I am begging all of you out there to please vote. Ask you friends to vote.
Makenzie's doctor is an amazing women- she is very involved in most if not all SMA research. She gave us so much insight regarding finding a cure. For us, it was to late. Kenzie couldn't wait- but there are children out there and future children out there that will unfortunately have to deal with this disease. Imagine if they had the power to cure SMA now?
Please vote.
13 comments :
Kendra....just tried to vote and couldn't get the link to work. Could be user error, but wanted you to know!
I was just coming to all the sites I know who are posting about voting to let them know if people are having trouble voting don't give up!!! The site to vote is just being overloaded right now. The voting is from the 15-22nd so if you can't get through today, KEEP TRYING until you do!!!! Em
Glad i could help...let me know if I can do anything else. =)
I was at dollar tree today and bought a dozen balloons for your little girl, one in every color pretty much because i don't know her favorite. I hope she gets them and {LOVES} them
I wish i knew her, your story inspires me. you are the cutest person i have ever "met". I want to give you a hug.
{PS} I think having a kenzie day each month is extrodanary, what a perfect way to celebrate your beautiful child and the time yiu had together
Thank you for sharing your heartbreaking story. I saw your comment on Lulu's blog and couldn't help but know of your angel that saved lives by donation. I am learning so much of this amazing miracle. I have gone on facebook and voted and I will definately share this knowledge of SMA. Please let me know if there is anything else I may do for your amazing family.
Kendra,
Im honored - as Im sure all your readers are - to be able to support you and send you love through your blog. Im even more honored that you read my comment and asked your friends, family and readers to join in the fight to cure SMA in Kenzies name. I know if we all work together, we can win this money and get rid of SMA. I just checked the Chase leaderboard and we're in 4th place so we need to keep up our efforts to spread the word so we can win!
I know that Kenzie and all the other amazing SMA children who are in heaven are cheering us on. She is my inspiration and I know with her help, we'll get this thing!
Thank you for being so amazing and touching all of us so deeply by sharing your life with us. Not being able to do anything to help families with SMA makes me feel so helpless and I hope that by working towards a cure, I can give a little bit back to you for all you have given.
Hugs and kisses from California
Julie
xoxox
I just wanted to let you know that I don't have a Facebook, but I sent out an email to all of my friends and family that do asking them to vote and I have already gotten back many emails telling me they voted. I am so happy that I am able to help in some little way. Please let me know if there is anything else that I can do!! I would love to do anything!! Much love!!
I'm Lulu's aunt and I just read your comment that you left on her blog. Your little Makenzie is such a beautiful little girl. Thank you for sharing her story and for allowing her to bless the lives of other sick children like London. God bless you!
Kendra, I just wanted to let you know what an amazing, strong women you are! I have never met you..I just came across your blog the day after Christmas. I spent 3 hours reading(and crying) through your blog, learning about Kenzie's story. I just wanted to let you know what an impact your story has had on my life. After reading your blog, I pulled each of my 2 children out of bed (it was in middle of the night)and just held them and thought about how lucky I am to have them. Being a nurse at Primary Children's and being very involved in the Muscular Dystrophy Association for the past 13 years, I thought I knew a lot about SMA and other types of Muscular Dystrophy, however I found that I knew nothing. I knew what I had seen in my years serving with MDA, but I didn't know what it was like to live it, and to lose a precious child so early in life. I have told many of my fellow nurses your story, and we have all spent hours reading your story. I have to check your blog everyday to see how you are doing. I just wanted to let you know that Kenzie has affected so many people that she never even know, although we feel that we know her through your blog. Just keep taking it a day at a time! You are an amazing mom! I will make sure to let all my friends that I am involved with in the Muscular Dystrophy Association know about that site to vote. It is about time there is a cure for SMA!!!! Take care!!
I've asked all my readers to vote for this, and I will be voting to. ♥
Done, this is wonderful. I hope it works!!! Thinking of you!
I voted! Let us know if we can do anything else!
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