Home Please help! Vote For SMA

[ChinaCat]

Hope this is an ok thing to post, if not Admin let me know!

A friend's daughter was diagnosed with SMA at 10 weeks. This is a heartbreaking disease and is the number one genetic killer of infants. I had never even heard of it before.

"SMA -- Spinal Muscular Atrophy -- KILLS more BABIES than any other inherited disease. Babies with SMA are born healthy and their minds are never impacted by the disease. But eventually their bodies FAIL them. Within months of an SMA diagnosis, these vibrant, intelligent children fall PARALYZED and need machines to help them EAT, COUGH, SWALLOW, and BREATHE. 50% DIE before their 1st birthday, 90% by their 2nd. 1 in 40 people UNKNOWINGLY carries the SMA gene. That could be YOU. That could be YOUR child. There is NO treatment and NO cure, but there is HOPE! The National Institutes of Health -- the NIH -- has coined SMA the disease “CLOSEST to TREATMENT”. Leading researchers have stressed that a CURE is POSSIBLE -- IF provided adequate funding. And SMA research is already BENEFITING research into DOZENS of OTHER diseases. This $1 Million WILL have a MATERIAL IMPACT on CURING this CRUEL INFANT KILLER...FOREVER. Be part of a MIRACLE. VOTE: Gwendolyn Strong Foundation."

SMA is close to a cure! Chase Community Giving is donating money to the charity that receives the most votes. The Gwendolyn Strong Foundation will donate all money to research for a cure for SMA. They are in 6th place right now, so close!!!! I think if they make the top 5, they will get some amount of $.

Please go to www.voteforsma.com and vote! I think you can vote up to 5 times.

Thank you!!!!!! Let's put the PS magic to work!!!!!ETA: VOTING ENDS TOMORROW, FRIDAY JANUARY 22!!!! SO VOTE NOW.

 

[somethingshiny]

China~ Thanks for posting this. I just got an email from a friend of ours (we were actually raised like cousins although there''s no blood relation)

Their second child was perfect at birth. He flourished and was cute as could be. One day they noticed that he wasn''t moving his legs as much. They started looking into it and discovered that he suffers from Werdnig Hoffman''s disease. This is a severe form of SMA and he wasn''t expected to live to be 2. He is currently in the first grade (one of the oldest with this form of SMA). He''s rushed to the hospital often, has 24 hr care and is on a respiratory machine, feeding tube, as well as a conglomeration of other devices. This little boy is kind and funny, smart and caring. He is "all there" even though the most muscle control he has is over a couple fingers.

Most children with SMA will die in a relatively short period of time. They are unable to clear their lungs and can succumb to pneumonia and other respiratory illnesse. Eventually their diaphragm can''t even allow them to breathe. Some will starve to death. You can see the muscular atrophy. A fat baby boy went to a thin little boy in just a few months. It is truly devastating to watch.

This little boy''s parents have 2 children. N''s older brother is perfectly healthy. Neither the mom nor the dad realized that they carried this gene. If two people who have the gene have children, the chances of that child having SMA are 1 in 4.

Please, take a moment and try to get some more funding for this catastrophic illness.


We really are close to a cure. This little boy has hung on KNOWINGLY for years. These children deserve a chance.

 

[ChinaCat]

Wow, Something Shiny. Thanks for posting this. What a strong little guy your friend has!!!!

 

[somethingshiny]

PSers, if you haven''t voted, please take the time to do it now. Today is the last day!!

VOTEFORSMA.COM (link in first post!!)


Thanks for your help!

 

[packrat]

Dangit, I wish I''d seen this sooner! I got my vote in and sent out 6 requests. I''ve never even heard of this disease!