What is SMA?

To be honest three years ago I had no clue what SMA was, or why I should care.

Then from afar, I watched a mother loose a battle, and choose to begin a new one. SMA took her baby from her arms early, but left behind a drive to educate, encourage, and help others. 
This year I have decided to partner up and help with her annual fundraiser. But first let me answer the question of what SMA is.
My own research has helped me to understand that SMA actually represents a group of diseases that effect the motor neurons specifically in the spinal cord and brain stem. Muscles that are controlled by motor neurons are used for things like breathing, crawling, walking, head and neck control, and swallowing. Pretty important stuff. Muscles will become smaller (atrophy), without proper activity from motor neurons.

I have found varying information on how often this occurs, but the number of one-in-6,000 to one-in-20,000 individuals are effected world wide. Infants, children, and adults are effected by this disease. Research has been able to determine that individuals effected receive one gene from their mother and another from their father. If both mother and father have the gene there is a 25% chance one of their children will inherit the disease. Between one-in-40 and one-in-80 men and women carry the gene.

“The scary part is SMA kills more babies than any other genetic disease.” Fight SMA Website

So why am I talking about it and what am I asking you to do today?

Give a little (or a lot) with me in support for Families of SMA. From their website;

Families of Spinal Muscular Atrophy is dedicated to creating a treatment and cure by:– Funding and advancing a comprehensive research program;
– Supporting SMA families through networking, information and services;
– Improving care for all SMA patients;
– Educating health professionals and the public about SMA;
– Enlisting government support for SMA;
– Embracing all touched by SMA in a caring community.

Ways YOU can participate.

Donate a dollar or two here.  Really just a buck adds up. If each one of you donated just a dollar our goal would be met before the end of the week. One candy bar, one 20 oz soda, one coffee at Starbucks, just one  George Washington …. or two or three, but start with just one.

If you want to get when you give you can buy one of our Victory for Violet T-shirts here.

This is what they will look like. Just $17.35 after shipping, and it will come directly to you! They are also in ladies shirts, I figured that would be best as it is a quite feminine design. 100% of the proceeds will go to this fundraiser, and be combined with our other donations. They will not print any of the shirts until we hit our goal of 20, just an FYI. If we do not sell 20 shirts no one looses anything. If we do, then we raised more for FSMA, win win.

Or you can always attend the live in person fundraiser event;

August 3rd in Southwick MA they will be hosting a Fundraiser Poker Run. If you are near enough by I encourage you to join in the fun.

Please take the time and offer your support however you see fit. We will keep our fundraiser open until August 3rd after that time you can still show your support and donations directly thru the FSMA website
If you don’t have any dollars to spare please consider sharing this post (the buttons at the bottom make it easy).
Gwen
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8 Responses to 'What is SMA?'

  1. What a noble cause! Thank you for letting us know about this 🙂

  2. Thanks for letting me know about this!

  3. Notageek says:

    What a great cause! I have actually never heard of SMA. Thanks for the awareness and education!

  4. andi says:

    thanks for this!

  5. Thanks for telling me about this – I have seen it pop up and I wasn’t sure what SMA was! Thank you for teaching us about it!

  6. I personally have only heard small references of information about SMA. But never really knew what it was-I am surely grateful to be now more aware of this and how devastating it can be.

    I do have some family in that area, so I will be sure to make them aware of the upcoming Poker Run. I am sure they would be very interested in the cause. Thank you for sharing such a difficult memory and tragic topic within your families lives, it will help so many to be more informed and know that there is support out there.

    • And my prayers are with the mother you spoke of, as she has now had a profound affect on people’s lives. And prayers for all that have such a difficult battle to face.

  7. kat b says:

    Thanks for sharing this with us. What a great cause.

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