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The #1 Genetic Killer of Young Children – that You’ve Never Heard of

The #1 Genetic Killer of Young Children – that You’ve Never Heard of

Thank you for the opportunity to post as “guest bloggers” on Care2.com as we campaign across the U.S. to raise much needed awareness about Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children.

Although not commonly known, SMA kills more children than any other genetic disease; few babies live beyond the age of two. Our daughter, Gwendolyn, is one baby fighting SMA and, at only 21-months-old, Gwendolyn has already outlived most of her peers in the fight. SMA is a degenerative, terminal disease that 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. One in 35 people, or nearly 10 million Americans, unknowingly carry the gene responsible for SMA and recent research is showing that the prevalence may be even higher. 

There is currently no treatment and no cure, but there is hope as the National Institutes of Health (NIH) has coined SMA as the “disease closest to treatment” of more than 600 neurological disorders and 50 of the nations leading researchers have publicly signed a statement stressing that a viable treatment or cure for SMA is possible in the next 5 years IF given the proper resources.

When Gwendolyn was diagnosed with SMA our local neurologist told us that there was nothing that could be done and to take her home and love her. And while we no doubt live every second of every day cherishing our precious time with Gwendolyn, sitting idly and doing nothing was not an option for us. After learning how mature SMA research is and how close researchers are to a cure, we have made it our passionate mission to leave no stone unturned in raising awareness about SMA. We truly believe that through awareness SMA will go from being on the cusp of a cure to a curable disease. And while we hold little hope that our efforts will impact Gwendolyn’s life, we are hopeful that in some small way what we are doing will impact future SMA generations so they will not have to go through what our little Gwendolyn has endured.

Get Involved and Help End SMA:

http://SponsorAMile.com  - We formed the Gwendolyn Strong Foundation (GSF), a 501(c)(3) status pending nonprofit organization, to raise awareness about and fund research for SMA. As one of our first awareness and fundraising campaigns, we are driving 5,000 miles from California to Mississippi to unite Gwendolyn with her 104-year-old great-grandfather and are rallying SMA support along the way. We launched http://SponsorAMile.com, in which each one of Gwendolyn’s 5,000 miles is sponsored for $10 per mile. 100% of the proceeds go directly to GSF to benefit SMA awareness and research. Our goal is to raise $50,000 and to date we have raised over $32,000. We left California on June 21 headed for Mississippi armed with flyers, banners and a call to action – End SMA!  To help us reach our goal, sponsor one (or several) of Gwendolyn’s miles by visiting http://SponsorAMile.com.

http://PetitionToCureSMA.com – We started http://PetitionToCureSMA.com as a grassroots effort to drum up broad national support of legislation currently in Congress, The SMA Treatment Acceleration Act, which would help organize SMA research striving towards a cure. To date, our petition has received over 66,000 signatures from around the world and the data from our petition is effectively lobbying members of Congress in support of this important legislation. To sign our petition and tell Congress you support a cure for this leading infant killer, visit http://PetitionToCureSMA.com.

For more information on SMA and Gwendolyn’s daily life visit http://GwendolynStrong.com

For more information on SMA and the Gwendolyn Strong Foundation visit http://GwendolynStrongFoundation.org

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by Bill and Victoria Strong, parents of Gwendolyn and founders of The Gwendolyn Strong Foundation

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62 comments

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5:10AM PDT on Jul 30, 2009

Have you seen a Natropathic Doctor? If you have left no stone untruned I am sure you have - but if not then take the time to look one up and go visit and have faith in what they are doing, it's all done naturally. Good luck and God bless.

5:39AM PDT on Jul 29, 2009

We ourself have lost our baby "Jumaana" when she was just 4-month old for SMA in November 2008. We know how painful it is. These babies will be mentally very active than any other babies of their age, but physically they need a lot of support in everything. Our baby was an angel & we miss her so much, but we are glad she will be safe with the God. And we will be very much happy if there will be an end to SMA as early as possible as it is the no.1 genetic killer for sure.

Good Luck to Gwendolyn & parents.

-J.Syed Ali - www.jsyedali.com

10:26PM PDT on Jul 22, 2009

hey guys..
i'm really shocked to see this. I have heard of his disease but do not know much about this....but i feel veryy sad for the sweet babies suffering from this disease...may god bless them....n i'll pray for them..

9:34AM PDT on Jul 22, 2009

The ratio of a child getting this disease is very high. This should be made a top priority.

12:18PM PDT on Jul 14, 2009

We need to be aware and careful with the disease. More and more we have diseases that threaten the world.

11:14AM PDT on Jul 13, 2009

I wish you every success in finding a cure my thoughts are with you all.

8:57PM PDT on Jul 10, 2009

I think my biology teacher mentioned this disease at some point last semester. It's terrible. All the best to Gwendolyn and her family.

Robert Garvin, this should answer your question:
"[SMA is] caused by an abnormal or missing gene known as the survival motor neuron gene (SMN1), which is responsible for the production of a protein essential to motor neurons. Without this protein, lower motor neurons in the spinal cord degenerate and die. " That's according to the National Institute of Neurological Disorders and Stroke, from the following web page: http://www.ninds.nih.gov/disorders/sma/sma.htm#What_is

It is therefore not caused by malnutrition.

8:57AM PDT on Jul 10, 2009

You are in my prayers....and.....Prayer is power!!!!!

3:16PM PDT on Jul 9, 2009

Actually I was not going to comment any further but Marena hit the nail on the head. If the problem is not contagious, then there has got to be a different cause. These folks definitely need our support for much needed research, but the money should be used in a very much broader spectrum than trying to find some far off cure.

Could it be that this DIS-EASE is similar to deadly dis-eases which are caused by simple lack of nutrition? To mention just one, SCURVY. The simple "cure" for scurvy is right on trees in many orchards and also in the vegetables in the garden----Natural vitamin C.

There are other dis-eases like rickets which are really only deficiencies of nutrition. Sometimes it is only the not knowing of this cause (ignorance of knowledge) that leaves the devastation wide open to keep going. Raise money for sure but use it in the proper investigation for deficiencies, not by looking for some drug or expensive operation to help solve the problem. Start looking outside the box as we did with Lily and right there could be just the answer needed. My suggestion is to investigate the "Glycome" as that is what changed Lily's future, it could possibly do the same for Gwendolyn. It is only a suggestion but it could make a vast difference for her, it has for many others.
Having Faith in God is important but sometimes we need to investigate what God has already provided in nature and put it to the test. God Bless you Bill and Victoria in your quest.

11:14AM PDT on Jul 9, 2009

Nura Isa, SMA is not a contagious disease and it is occuring all over the world.

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