Brooke, Brielle and I have been working very hard contacting our state Governor, local Senators and Representatives trying to get a proclamation naming August SMA Awareness month.
Well, WE DID IT!! Governor Snyder has named August 22nd as SMA DAY in the state of Michigan!
The Proclamation reads as follows:
WHEREAS Spinal Muscular Atrophy (SMA) is the leading genetic killer of children under the age of two and one in 40 Americans carry the gene that causes SMA and SMA is known to cause degeneration in voluntary muscle movement for those that survive with the disease and
WHEREAS Spinal Muscular Atrophy crosses all racial, ethnic and religious boundaries, and can strike anyone of any age, race or gender and
WHEREAS increased awareness of Spinal Muscular Atrophy will lead to increased knowledge and increased support for both disease research and the families affected by the disease, hopefully leading to a cure and
WHEREAS Patient Groups have named August as National Spinal Muscular Atrophy Awareness Month in order to raise awareness and help promote research into this devastating disease.
THEREFORE, BE IT RESOLVED that support should be given to all organizations that are working hard to find a treatment and/or a cure for SMA, including Families of SMA.
NOW, THEREFORE, it is proclaimed that August 22nd, 2011 be observed as Spinal Muscular Atrophy Awareness Day. All citizens are urged to take interest in and give full support to the effort to raise awareness and find a cure for SMA.
NOW, THEREFORE, I Rick Snyder, Governor of the State of Michigan, do hereby proclaim the August 22, 2011 as Spinal Muscular Atrophy (SMA) Awareness Day.
And the best news is that our family and friends wrote to their local Government officials in honor of Brooke and Brielle and heard back from them too!!
- Aunt Christen was able to get a Proclamation from the Governor Bev Perdue, for the State of North Carolina declaring August 7th as SMA Day.
- Grandpa Richard was able to get a Proclamation from Governor Deval Patrick, for the State of Massachusetts declaring the whole month of August for SMA Awareness!
- Our dear friend Carol in Costa Mesa, CA was able to get her Mayor Gary Monahan to proclaim the whole month of August as SMA Awareness month!
- Uncle Bruce received the Proclamation from Governor Janice K. Brewer, for the State of Arizona declaring the whole month of August as SMA Awareness month!
- The Miedel family received the Proclamation from Governor Bill Haslam, for the State of Tennessee delcaring the whole month of August as SMA Awareness month!
Pictures will be posted soon!!
on 2012-07-31 20:36 by Sarah