August is Declared Spinal Muscular Atrophy Awareness Month in the state of Michigan!

Michigan is going to be joining the other states - declaring August as “Spinal Muscular Atrophy Awareness Month!”  This marks our fourth year of being involved in getting recognition for all the families dealing with SMA (past and present).  With the help of our State Senator Tonya Schuitmaker we were able to get the Proclamation again this year!  Our State Representative Aric Nesbitt will introduce the resolution on the House floor for us too!  The State Senate will pass the resolution in the last week of August and the House will pass the resolution in the first week of September.  We are so excited!!

We will be sure to post pictures once we get the resolutions!

Michigan is going to be joining the other states - declaring August as “Spinal Muscular Atrophy Awareness Month!”  This marks our fourth year of being involved in getting recognition for all the families dealing with SMA (past and present).  With the help of our State Senator Tonya Schuitmaker we were able to get the Proclamation again this year!  Our State Representative Aric Nesbitt will introduce the resolution on the House floor for us too!  The State Senate will pass the resolution in the last week of August and the House will pass the resolution in the first week of September.  We are so excited!!We will be sure to post pictures once we get the resolutions!

Update on Friday, September 6, 2013 at 1:46PM by Sarah

Senate Resolution 0079 (2013)

A resolution recognizing August 2013 as Spinal Muscular Atrophy Awareness Month in the state of Michigan. 

http://www.legislature.mi.gov/(S(0hvbis55ho5skivgjqmaodz0))/mileg.aspx?page=getobject&objectname=2013-SR-0079&query=on

August is SMA Awareness Month!

Like our Facebook Page!

Participate in the Pampered Chef Fundraiser!  Hurry because orders are due August 3rd!

 

Super Call!

Brielle earned a "super call" from her principal! She has shown the life skill of perseverance.
Way to go Brielle!!

Pfizer to Develop Families of SMA Quinazoline Drug Program

Yay for Pfizer!! They are right in our backyard! We are hopeful for their successful development for a potential treatment for SMA.

“Pfizer to Develop Families of SMA Quinazoline Drug Program.
Repligen Corporation announced January 3, 2013 that it has entered into an exclusive worldwide licensing agreement with Pfizer Inc. to advance Repligen’s SMA program, originally in-licensed from Families of Spinal Muscular Atrophy (FSMA).”

http://www.fsma.org/LatestNews/index.cfm?ID=7490&TYPE=1150

Spine X-Rays - Improvement!!

Next up on the docket for the new year and new evaluations was an appointment with our pediatric orthopedic specialist. He took X-rays of the spine to look for curvature. I have been told that when a child has SMA, it’s not a matter of IF the child will get scoliosis, it’s a matter of WHEN. So we want to keep a close eye on the spine.

SMA is a progressive disease so we don’t expect to hear good news at doctor appointments. BUT, the doctor told us that Brielle has actually IMPROVED since her X-ray taken in 2011!! What a blessing!! Brooke has stayed the same (no curvature) so far. She was a little wiggle worm on the X-ray chair so I’m not sure they got the best picture. :)