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Archive for January, 2010

WORLD TURNED UPSIDE DOWN–HELP, HELP?

WHEN THE WORLD TURNS UPSIDE DOWN

Folks, I want to ask your help on something. It won’t cost you any money, and only about thirty seconds of your time.

If you are a Facebook member, (if not, you can easily become one) go to: http://VoteForSMA.com, and click on VOTE FOR CHARITY.  I just did.

Why?

As you know, I have a little friend Pranav, age 4, who has spinal muscular atrophy, a cruel condition not unlike a slowly progressing spinal cord injury.  That is about the terrifying thing that can happen to a family, when your child is endangered—and most children with SMA die before the age of 2. Pranav is paralyzed, but he is still fighting on.

 Enter Bill, Victoria, and Gwendolyn Strong, whose family is fighting to cure SMA.

His group, the Gwendolyn Strong Foundation, (named after his daughter, who has the condition) supports research to find a cure for SMA—and they have already contributed funds to Dr. Hans Keirstead.

Here’s the deal. If enough people go to http://VoteForSMA.com, and click on VOTE FOR CHARITY, and his group wins this advocacy contest, one million dollars will go to advancing the cause of Spinal Muscle Atrophy research for cure.

Look at the picture of Bill, Gwendolyn, and Victoria. A terrible disease turned their family’s world turned upside down.

Help them straighten it around—for everyone.

Please read  the following message from the Strong family carefully, and then click on that http://VoteForSMA.com address; it might (with no cost to you) help him and his group achieve a serious funding breakthrough—and he has given me his personal word that every nickel will go to the research.

If you want to contribute a buck or two, that’s fine as well—but to vote is for free.

Vote To Fund Research To Help Cure SMA, The Leading Genetic Killer Of Babies

Your free vote for the Gwendolyn Strong Foundation (GSF) in the final round of the Chase Community Giving campaign on Facebook will help us win a $1 Million grant for neuromuscular disease research, including extremely promising and groundbreaking stem cell programs, and has the potential to accelerate a cure for our daughter’s disease, Spinal Muscular Atrophy (SMA), and materially benefit many other conditions that impact millions of people.

Final round voting on Facebook runs from Jan. 15-22. Please go to http://VoteForSMA.com to vote for GSF to win $1M to help cure SMA.

SMA is a degenerative and terminal disease with no current treatment or cure. While not a household name, SMA kills more infants and young children than any other inherited condition. One in 40 people unknowingly carries the SMA gene — few have any known family history. Babies with SMA are born perfectly healthy and their mind is never impacted. Yet, within months of an SMA diagnosis, their bodies begin to fail them. They become completely paralyzed and require machines to help them eat, cough, swallow, and breathe. These vibrant, intelligent children will slowly become “locked-in” and over 90% die before their 2nd birthday; many never see their 1st.

My daughter, Gwendolyn, has SMA and my wife and I started GSF to fight for a cure for this cruel disease and to fight alongside our little girl. Gwendolyn was born perfectly healthy in October 2007, but was diagnosed with SMA at 6-months-old. At only 2-years-old, Gwendolyn has now outlived most of her peers and doctors consider her an outlier. It is torture to watch our little girl’s body and physical abilities rapidly deteriorate right in front of our eyes — as her mind continues to grow and mature. Our once babbling baby is now completely paralyzed and, although it kills me to admit this, she has even begun to lose the ability to smile her sweet smile. Gwendolyn continues to fight for every single breath, every single day and, as parents, we refuse to accept “nothing” as our treatment plan — not when SMA research is so very promising. We founded GSF so that we could close the gap on funding for promising research in the pipeline — for Gwendolyn, for all babies battling SMA, and to ensure that no future babies are stolen by this cruel disease.

Although there is currently no treatment and no cure for SMA, there is mountains of hope as research of SMA is extremely mature. The SMA gene has been identified, a backup gene found, and the lacking muscle supporting protein discovered. So much is known of SMA in the research community that SMA is considered a “gateway” disease whose research is already benefiting many other more common conditions that impact millions of people, including: spinal cord injuries, Alzheimer’s, ALS/Lou Gehrig’s, Parkinson’s, the muscular dystrophies, and even some forms of cancer.

The Gwendolyn Strong Foundation, a 501(c)(3) nonprofit, was recently voted as one of the top 100 nonprofits of more than 500,000 organizations in the Chase Community Giving campaign on Facebook. For that honor, we received a $25,000 grant from JP Morgan Chase — which we proudly and immediately directed to a groundbreaking stem cell program at UC Irvine led by Dr. Hans Keirstead that is headed to human clinical trials in 2010 and was named as a project that could “change science forever”.  GSF is now in the final round of the Chase campaign with a chance to win up to $1 Million. We have already pledged 100% of anything we receive from the final round to SMA focused awareness and research programs. This is an extremely material amount of funding for SMA and WILL accelerate that cure. Please take 30 seconds to vote for GSF to win the $1M grant to help cure SMA and benefit many other life-altering conditions.

Final round voting on Facebook runs from Jan. 15-22. Please go to http://VoteForSMA.com to vote for GSF to win $1M to help cure SMA.

For more information on the GSF Chase campaign, please go to http://GwendolynStrongFoundation.org/Chase

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