Mommy was born and raised in Alaska, and Gramma and way rad Uncle Trevor are still up there. So Gramma has been busy contacting the lawmakers up there about the SMA Treatment Acceleration Act. She spoke with a representative from Senator Mark Begich's office and informed her about SMA, the petition, and told Dakin's story. She said she would contact her counterpart in Senator Begich's office in DC and communicate her support for the Act.
She also spoke with a rep in Senator Lisa Murkowski's office. While she was on the phone with him, he looked at Dakin's blog and read through what we have posted here. Gramma also talked to him about the petition and the Act, and he too promised to speak to his counterparts in Washington. In response, this is what Gramma received from Senator Murkowski:
Thank you for contacting me with your support for the Spinal Muscular Atrophy Treatment Acceleration Act. Additionally, I thank you for sharing Dakin's story with me.
The legislation, if enacted, would require the Secretary of Health and Human Services to establish the Spinal Muscular Atrophy Coordinating Committee in order to coordinate activities across the various departments at the National Institutes of Health (NIH), and among other Federal health programs with activities related to SMA. I believe that greater interagency coordination would enhance the scope of the research performed so as to mitigate the challenges stemming from genetic disorders.
You may be interested to know that in 2003, the National Institutes of Neurological Disorders and Stroke (NINDS) established the Spinal Muscular Atrophy Project: A Collaborative Program to Accelerate Therapeutic Development for SMA. The SMA Project's unique collaborative process between private, public, and non-profit partners provides a model research program that can be replicated to accelerate the development of safe and effective treatments for a wide variety of disorders.
The SMA Treatment Acceleration Act has not been introduced in this Congress. Should the legislation be introduced and considered by the full Senate, I will have your support in mind.
Again, thank you for contacting me and all my best to Dakin.
Sincerely,
Lisa Murkowski
United States Senator
I loved how personalized this letter was--I do think Senator Murkowski may have taken a look at the blog (I check the traffic and we do get some from DC sometimes...lol). Gramma also promised to bug them when the Act gets reintroduced. Thank you for being a great advocate, Gramma!!
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4 comments:
Wow so great that you got a personal letter back. Dakin you have one cool grandma.
grammas ROCK
That is AWESOME! Thanks for sharing! Your little Dakin is such a cutie!
You asked about our vent... Caleb is on the vent at night- then his trach mask and oxygen during the day. I'm hoping he'll eventually get off of oxygen.... cross your fingers:)
WOW you go grandma!! That is awesome that she is speaking out on his behalf nothing is better than family I tell you!! They are our strength! A personalized letter and everything that is great making more aware! YAY!! He is such a cutie how can you not be touched by him and want to do everything you can!!?? :)
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