Tuesday, March 24, 2009

The SMA Treatment Acceleration Act

Hi all! I have noticed that we have gotten a lot of new traffic, and so I wanted to bring up a subject once more that is really really important to us: The Spinal Muscular Atrophy Treatment Acceleration Act. Spinal Muscular Atrophy is the number one genetic killer of children under age 2. One in forty people carry the gene that causes SMA. SMA is a tragic disease that leaves a child in a body that is unable to move, but does not affect the mind. Most children with SMA Type one will not live to see their 2nd birthday.

But there is HOPE--the National Institues of Health have chosen SMA as one of the neurological diseases closest to treatment and cure.

The SMA Treatment Acceleration Act is in support of making that treatment and cure reality. This landmark legislation--that already has bipartisan support--will help to unite SMA research programs and ultimately lead to treatment and a cure. We have come to know and love so many of these kiddos afflicted with 'regular' Spinal Muscular Atrophy--they are beautiful children whose lives will most likely be cut tragically short by a disease that is years, yes, YEARS away from a cure. Not decades, not centuries. YEARS. Just a few even.

This particular legislation will not only benefit SMA research, but a whole host of other neurological diseases as well--ALS, Tay Sachs, Fragile X. And most importantly for us, maybe Dakin's disorder (Spinal Muscular Atrophy with Respiratory Distress--SMARD)as well. This Act is so important to us because it is pretty much our only hope: no one that we are aware of is researching SMARD in the US. This is all we have.

This legislation will be reintroduced into Congress this year, but it needs more support. Bill and Victoria Strong, whom we have come to 'know' through blogging, are trying to garner that support with the SMA Treatment Acceleration Act petition. We have posted about the petition before, but wanted to add a few other things regarding raising awareness for it. The Strongs recently posted 5 ideas that one could do to help promote the petition. This is from their beautiful daughter Gwendolyn's blog:

50,000 signatures in support of SMA research is remarkable, but to reach 100,000 we need YOU! Here are 5 ways that you can help us get the SMA Treatment Acceleration Act passed this 111th Congressional session:
Household check. Make sure that your spouse or others in your household have also signed PetitionToCureSMA.com. It only takes 30 seconds.
Petition flier. Download our petition flier (click here to download) and put it up in your community (e.g. coffee shops, lunch rooms, community bulletin boards, etc.) or pass it out to groups or organizations and ask for their support, too.
Hit the streets. Download our petition signature template (click here to download) and start gathering signatures in person. You can either fax, mail, or email (vstrong@gmail.com) the completed sheets to us once you are done so we can input them.
Facebook. Use your Facebook status to remind your "friends" to sign PetitionToCureSMA.com and ask that they do the same. Also join the Facebook group "PetitionToCureSMA.com" and invite your Facebook "friends" to join as well.
Blogs, etc. Contact blogs, forums, or other online communities you frequent and ask for their help in promoting SMA awareness by posting the link to PetitionToCureSMA.com.

These are great suggestions. In another post they also suggested Twittering.

This Act might just seem like more money spent, but in reality the money that would be allocated towards SMA research is already in the National Institutes of Health's budget. If we can get this Act passed, so many will benefit--the sweet families who say goodbye to their little ones with SMA too soon, those who suffer with ALS or Duchenne Muscular Dystrophy, and so so so many more. Maybe it will even help Dakin to breathe on his own again. Please choose at least one thing to do to help spread awareness. Thank you so much for your help!!

1 comment:

Mandy said...

Ok Devon!! We for sure will!! Our little family is praying for your success!! Good luck!! Let us know always what else we can do!!