A Mother Needs Our Help! Together We Can Make a Difference! (Extra Entries For 30 Seconds of Your Time)
Wednesday, February 18, 2009 Posted by Jolly Mom
The other night, I was contacted by a mother named Victoria who desperately needs our help. Her beautiful 16-month old baby girl, Gwendolyn has a degenerative and terminal disease called Spinal Muscular Atrophy or SMA. It is the NUMBER 1 genetic killer of infants! About SMA:
- SMA is #1 genetic killer of children under two.
- SMA is estimated to occur in nearly 1 out of every 6,000 births.
- The gene that causes SMA is unknowingly carried by 1 in every 40 people or nearly 7.5 million Americans.
- The life expectancy for infants with SMA Type 1 is two years.
- SMA is a degenerative disease that destroys the nerves controlling voluntary muscle movement, including breathing and even swallowing -- SMA does not impact the mind at all -- making them trapped in their own failing body.
Gwendolyn was born perfectly healthy October 2007. Unfortunately, at 9 weeks old she became very ill and was eventually diagnosed with Spinal Muscular Atrophy or SMA. Gwendolyn will never walk, never sit up unassisted, and spends most time completely flat where she is most comfortable. Some days I can not pick her up or snuggle her because the movement is too much for her. She may never speak, although we are hopeful. And while she currently has some arm movement, it seems to weaken every day. She needs help to breathe and even to swallow her own saliva. However, her mind is perfectly fine and already she wants so desperately to do all the things that her failing body hinders.What We Can Do:
Currently, there is no cure for SMA, but there is a light at the end of the tunnel for Gwendolyn and the other children with this disease! The National Institutes of Health (NIH) has described SMA as the disease "closest to treatment" and researchers claim they are just a few years away from finding a cure. In fact, the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) have selected SMA as the disease closest to treatment of more than 600 neurological disorders.
There is landmark legislation, the SMA Treatment Acceleration Act, currently sitting in Congress that, if passed, would provide researchers the resources needed to make that last crucial step. This is a bi-partisan bill that would not only help children diagnosed with SMA, but it would help further research for many other diseases as well!
This is where you can help by taking 30 seconds of your time to sign the online petition.Their goal is 100,000 signatures and they are half-way there. Let's help them get the rest of those signatures! Together, we CAN do this and MAKE A DIFFERENCE not only for Gwendolyn, but also for the other babies who have been or will be diagnosed with SMA. These signatures DO help and have already brought attention to this bill and raised awareness for this terrible disease.As a thank you, I will give you ONE additional entry into ALL of my contests when you sign the petition. Where I will REALLY reward you is if you can get FIVE or more signatures. If you can show me that you got FIVE or more people to sign the petition, I will give you FIVE additional entries into all of my contests for the next TWO WEEKS! That's a total of SIX extra entries! So, if you're a blogger, post it on your blog and ask your readers to sign it. Email your friends and family too. If you don't have a blog, that's fine. Email your friends and family and get them to sign the petition. Either way, I'll need you to email me and let me know which signatures you got. When you enter the contests, leave me a comment saying "Gwen". If you qualify for all six entries, make sure that you leave six separate comments. I know that I don't need to say this to most, but please NO CHEATING!
I currently have over 700 subscribers and over 300 followers for my blog. If we all sign it ourselves and get at least five more signatures, WE CAN MAKE A DIFFERENCE! My real hope? I hope that you get 10, 20, or however many signatures you can possibly get! Everyone knows at least five people so please let's help make a miracle happen for Gwendolyn.
Sign the Petition
To learn more about Gwendolyn, visit www.gwendolynstrong.com.
To easily write your representatives in Congress, please visit Fight SMA.
Watch The Video:
Technorati Tags: Fight SMA, Spinal Muscular Atrophy, SMA
February 18, 2009 12:16 AM
I signed it, but no additional entries are necessary...just knowing that my signature may help make a difference is enough.
I am going to tweet about this though and probably even do a blog post as well...this is important and more people need to be made aware...thank you for sharing this!
February 18, 2009 12:22 AM
Thanks for sharing. I just signed it!
February 18, 2009 12:44 AM
I signed it.... who wouldn't??!!!
Thank you for sharing about this! I also am praying for Gwendolyn and her family and all the others effected.
February 18, 2009 3:24 AM
Thank you for alerting us! I signed.
February 18, 2009 10:28 AM
I signed it. I am a nurse and I have seen so many babies die from SMA. Truly there is no reason to not have a cure as we do have the technology. It's the funding that is lacking. My heart goes out to this family.
February 18, 2009 11:44 AM
My husband and I both signed. Thank you for the entry offer, but you don't need to enter us in your contests. We are doing it for the babies. :)
February 18, 2009 12:05 PM
I signed and passed it along. No additional entries needed here. Just hoping you get the numbers and another baby and parent don't have to suffer. Thank you for bringing awareness to us all.
February 18, 2009 12:27 PM
I signed. I had not heard of this disease. I will keep that family and other families affected by it in my thoughts and prayers.
February 18, 2009 1:53 PM
Going to sign.
Thanks for writing about this.
February 18, 2009 3:16 PM
I signed! Prayers for this family!
February 18, 2009 8:35 PM
I signed. My heart goes out to Gwen and her family, and all families affected by SMA. I will also pass on the extra giveaway entries. As a mom, I can't even imagine what these families are going through.
February 18, 2009 8:42 PM
I signed and tweeted! I don't need the extra entries and am glad to help any way I can. Thanks for posting about this.
February 18, 2009 9:45 PM
Wow, I didn't even know about this. I honestly cannot even imagine. I really can't. I signed and emailed a ton of people but I don't want any extra entries for anything. Thank you for letting me help!
February 19, 2009 12:52 AM
I signed it. I also do not want any extra entries because we all need to help each other. My family will have this family in our prayers.
February 19, 2009 4:18 AM
I signed, of course and send the petition to my contacts. I don't want extra entries only congratulate you for publishing on your blog and let us know it. Thanks!
February 19, 2009 7:21 AM
Hi. Signed, but no worries about entries, extra or otherwise. Thoughts are with the family. Thanks for leading the charge.
February 19, 2009 9:00 AM
I signed the petition. The toddler son of dear friends of ours is suffering from SMA. Our son, who is the same age, prays for him every night in his bedtime prayers.
February 19, 2009 10:28 AM
I signed
February 19, 2009 1:07 PM
I signed, and I hope many others have too, And hopefully it will make a difference! And lil Gwendolyn and her family are in my prayers!
February 19, 2009 3:38 PM
Thank you from a mom who lost her 5 month old to SMA just a month ago. We need more awareness to save future kids from this horrible disease!
February 19, 2009 11:45 PM
I have never heard of this disease. I signed the petition before I even finished reading your post. My heart feels so full that I had to make a post about it as well. There's no need for extra enteries, I just pray that I've helped in some small way. You definitely have!
February 20, 2009 1:17 PM
I was about to get up from the computer and feign productivity when I found the link to your blog on The Jacobsen Family blog.
Thank you for posting about the petition! I am the mom of an SMA angel baby (Jeffrey) and have just started a new blog with a good friend/fellow SMA mom. The focus is SMA-related matters and a variety of resources, although we do branch out beyond the SMA confines :)
Again, thanks so much for helping spread awareness!
Helen ('Lucy')
February 20, 2009 1:20 PM
i signed hope it helps
February 22, 2009 3:05 PM
I know a lot about this condition as two of my cousins were born this way. One lived to 18 before passing away and the other is 16 right now. I'm happy to spread the word!
February 23, 2009 6:08 PM
I signed the SMA petition. I hope for the best.
maggie@mannwieler.com
February 23, 2009 10:49 PM
Signed and will also twit these. I know that you will reach your goal and make a difference. My prayers go out to you and families affected by this.
As a Mom, I thank you for sharing this and taking action. God bless.
February 24, 2009 10:56 PM
I signed it...plan to blog about it...and tweet about it...will place it on my Facebook wall too.
February 25, 2009 5:05 AM
I signed it. Children are gifts from God. God bless you all.
March 7, 2009 12:39 PM
Gwen
jeanilynne at gmail dot com
March 8, 2009 10:51 AM
gwen