Thursday, September 16, 2010

SMA Blog Party - Uppercase Living Vinyl Going the Distance to Raise Awareness

I know a woman who dedicates her career to raising money for the Leukemia & Lymphoma Society because her dear friend's daughter was affected years ago. In talking about this she says, "When your friend's kids become sick, it's like your own kids are sick, and you have to do something." That is how I felt when one of our baby daughter's play group friends was diagnosed with SMA - Spinal Muscular Atrophy - over 8 years ago at the age of just 15 months. While all of our kids began standing up, then walking, Zeke was still crawling, and it became clear that he wasn't developing at the same rate as the other babies. Zeke's diagnosis was a devastating blow to his devoted parents, and heart breaking for us play group families. However, he has been so lucky to have parents who began getting him help immediately: various therapies, the appropriate appliances (from leg braces to power wheelchairs and everything in between; SMA is not an inexpensive disease to manage) enrolling him in clinical trials, all to give Zeke the best chance to live with SMA and be ready when a cure is found.

Before I go too much further, here's a little bit of information on SMA.
  • It is the #1 genetic killer of young children.
  • 1 in every 40 people, or nearly 10 million Americans, UNKNOWINGLY carries the gene responsible for SMA. Few have any known family history. 
  • There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the disease closest to treatment of more than 600 neurological disorders. 
  • Researchers estimate that a viable treatment and/or cure is attainable in as little as 5 years – IF provided adequate resources.  
Simply, SMA eventually impacts every muscle in the body hindering the ability to walk, sit, stand, eat, breathe, and swallow. The mind always remains unaffected and children with SMA are bright, sensitive, and playful in spite of their failing bodies.  There are 4 types of SMA which range in age of onset and severity of symptoms. Zeke, who has Type II, is able to do many things including sitting up, breathing and eating unassisted, writing. speaking, and of course, playing video games. He goes to school every day and is a popular student.

Another precious SMA baby, Gwendolyn Strong, is not so fortunate. Diagnosed with Type I SMA, she faces challenges in almost every aspect of her life. However, like Zeke, she is lucky in that she has parents who will stop at nothing to improve her quality of life and help find the cure for this cruel disease. What Bill and Victoria Strong have accomplished in terms of awareness, legislative impact and fund raising is quite incredible, and a true testament to the power of one Strong voice.

Today's SMA Blog Party is just one of their many efforts to raise SMA's profile. Obviously, my blog usually focuses on all the wonderful ways Uppercase Living products can be used to decorate your home, but today shows that it's about more than selling UL products. Zeke's mom, who is one of my best friends, was also one of my first customers (and continues to be a great supporter). She saw that a little vinyl can go a long way and that our products can also help raise public awareness. She rides around with the a simple but powerful expression on her minivan (modified for Zeke's power wheelchair of course) and donated two of these expressions to be auctioned  at a recent SMA conference.

I've posted here about various causes, such as Breast Cancer, but none is as close to my heart as finding a cure for SMA. That's why one of the first things I did when designing this blog was to add a the Unite for a Cure button on the side bar. For every SMA awareness decal purchased from me, I will donate $1 directly to the Gwendolyn Strong Foundation. If you'd like to order one, you can design it directly on my website or contact me for help. Here are some other things you can do to help:

  • Visit the Gwendolyn Strong Foundation Facebook page. Victoria will post about various fund raisers and opportunities to vote to get funding for crucial research. Lots of great links here too.
  • VOTE TODAY to help GSF win $20,000 from the Jimmie Johnson Samsung Helmet of Hope contest, Go to, select the Gwendolyn Strong Foundation, enter the two security words, check the Official Rules Box, and then click "Vote Now." Do this every day through Sept. 29th.
  • Purchase a lovable bunny from My Bunny and Me and choose to have your purchase support SMA research. 
  • If you blog, blog about SMA today. The more people know about SMA, the better.
Tomorrow, I'll post details about my annual open house which I'm holding next week. But today, let's focus our collective love, energy and karma on all the families who live with SMA, mourn a baby who lost the fight, and the doctors and researchers who WILL find a way to end the suffering.

1 comment:

Lucy and Ethel said...

Thank you for this post!

Helen/'Lucy' (mom to an SMA angel)


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