Shameless plug here for a foundation a friend of mine set up after she lost her son to SMA. This is information she emailed just today, and hey, why have a blog if you can't occasionally use it for good?
I visited Washington D.C. in April to attend a conference on Spinal Muscular Atrophy (SMA). SMA is the disease that killed our son Dylan just before he reached 7 months of age. It is the number one genetic killer or babies. This conference was to address the research and progress that has been made in finding suitable treatment and a cure for SMA. An important piece of information to come from this conference is that the discovery of a back up copy of the SMN protein that is missing and thus causes SMA, can be found in each person with SMA. This means that scientists would not have to try to replicate it, instead they just have to determine how to make that back up copy function as it is supposed to and replace the missing protein. This is great news indeed!
There is a bill called the SMA Treatment Acceleration Act, that would provide funding, education, and establish a coalition of researchers in this field. This Act puts us one huge step closer to a cure for SMA.
We met with our Senators and Representatives to ask for their help in supporting and passing this bill. Now I am asking for your help in keeping it on the top of their agenda. I would greatly appreciate it if you could pass on the letter below and the attached word documents to everyone you know, asking them to send these documents to their Senators and Representatives. Everyday we get emails that are jokes, or heartfelt stories that we pass on. This is an email that can impact thousands of lives and really make a difference, please pass it on and also send the letter on yourself.
For those of you in Utah, I am providing the email addresses of the Aids for Senators Hatch and Bennett, along with Representative Bishop's aid. (Before you send on, you will need to change the names to your Senator/Representative.)
I appreciate your help and support. In case you want to see the faces of SMA, on Youtube there is a video that was played at our conference that will show you our kids. The very last photo is of my beautiful son Dylan. Spinal Muscular Atrophy Kids Video (The Kids of Fight SMA).
Please feel free to contact me with any questions.
Dylan's Friends/fightsma Utah
(SAMPLE LETTER, ORRIN HATCH)
Orrin G. Hatch
The United States Senate
Dear Senator Hatch:
Our families are writing you to ask your help in the fight against spinal muscular atrophy (SMA), the neuromuscular disease that affects, and potentially kills, our children.
Spinal Muscular Atrophy destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control and even swallowing. SMA is the number one genetic killer of babies under two. One in every 35 people carries the gene for SMA without even knowing. SMA is similar in severity and incidence to other well-known genetic diseases such as cystic fibrosis and Duchenne muscular dystrophy. These and over 40 other genetic disorders will benefit from additional progress on SMA.
Researchers have discovered the gene responsible for SMA, opening the door to promising new treatments. SMA was selected by NIH as the prototype for an accelerated drug discovery effort, singling out SMA as the disease closest to treatment of more than 600 neurological disease. Though there is reason for hope, resources are needed to move forward in finding a cure for SMA. With your help, we can find a cure for Spinal Muscular Atrophy.
As a call to arms on behalf of SMA research, the SMA community led by Families of SMA, The SMA Foundation and FightSMA has united behind the SMA Treatment Acceleration Act. Congressman Eric Cantor, a longtime friend to the SMA community, has agreed to cosponsor this bill. He is actively seeking a Democratic partner. Once a bi-partisan bill has been established, Senator Debbie Stabenow has agreed to sponsor the bill on the Democratic side.
Enclosed is the SMA Treatment Acceleration act. Congressman Cantor is determined to have a bipartisan bill before introduction. Senator Hatch, we hope that you will consider taking the lead on this important legislation in the Senate on the Republican side.
Thank you for taking the time to consider this important legislation.
(Your Name and Address)