SMA Awareness Proclamation Presentation by Senator Tonya Schuitmaker!

We were presented the SMA Awareness Day Proclamation today from Michigan Senator Tonya Schuitmaker!! What an honor!

“All citizens are urged to take interest in and give full support to the effort to raise awareness and find a cure for SMA.”

In celebration of SMA Awareness Day we are planning two fundraisers and need your help in spreading the word!  All money raised will go to The Families of SMA.

Fundraiser #1:  Dining to Donate at Applebees.  All Kalamazoo locations are participating and will donate 15% of anyone that brings in a flyer (or just mentions the SMA Fundraiser) on the day of August 22nd.  This is valid for the whole day and only need one flyer per table!

Fundraiser #2: SMA Art Auction!  Brielle and Brooke painted 8 paintings and we are putting them up for a silent auction on their Facebook Fan Page here: SMA Art Auction (created by B&B) for SMA Awareness Month going on NOW and ending on August 22nd, 2011.  Proceeds go to the Families of SMA Organization and your donations are tax deductible!

Please help us spread the word to make our first SMA Awareness Day successful!   

SMA Candle Lighting, Saturday August 13th at dusk.

SMA Candle Lighting will be Saturday, August 13th at 7:00pm. Join with families and SMA organizations around the country by lighting a candle at sunset to remember those SMA Angels who have lost their battle with SMA and to honor those who are still here fighting everyday!  SMA has taken a lot from us but it will never take our hope or our fight.  

We would love to see you share your photos of your SMA Candle Lighting tonight! Please post your photos on our Facebook page. 

 

August is SMA Awareness Month!!

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!! 

Update on Saturday, August 27, 2011 at 1:47PM by Sarah

 Arizona Proclamation Massachusetts Proclamation

   Michigan Proclamation

North Carolina Proclamation    

Wendy On Wheels Books, A New Favorite!

Today we received our Wendy On Wheels books!  These books are the first ever children’s book series to feature a main character in wheelchair.  The books are written and created by Angela Ruzicka who got the idea from her sister, Amanda, who has spina bifida.

When our package of books got delivered today we ripped open the box and immediately read Wendy On Wheels Goes to the Beach.  Brielle hung on every word and carefully studied each picture.  When that story was done, she wanted to read Wendy On Wheels Goes to the Zoo!  Then without hesitation, she wanted to read Wendy on Wheels Saves the Day!  She loved these books so much that when we were done, she wanted to read them all over again.  Wow, now that’s some serious book love! 

So after dinner and bath time were over, I let her pick one to read before bedtime.  She chose Wendy on Wheels Goes to the Zoo.  There is a funny part where Wendy and her friend Brandon visit the Chimpanzees and the chimps make funny faces at them through the window and Brielle and Brooke laugh and laugh about that.  I like that there is a discussion page at the end with just a few questions that ask how your child would have handled certain situations in the book.  It was fun to hear her answers and rationalizing… at just 3 years old.  

Here are some pictures of storytime before bed with their new favorite books:  

 

Below you will find the Wendy On Wheels books that are currently available and you can order them through Amazon.

 

Update on Friday, March 18, 2011 at 6:10PM by Sarah

Vote for Angela Ruzicka in the “Energizer Keep Going” Hall of Fame.  Just click the “like” button!

http://www.energizerkeepgoinghalloffame.com/2011/profile/angela-ruzicka-liebermann.html

Angela Ruzicka Liebermann is the creator of the character and author of the book “Wendy on Wheels.” “Wendy on Wheels” is a ten-year-old young lady who has a blast rolling through life in her wheelchair. Wendy is completely content with her life and makes the best of every new situation that comes her way. Angela believes disabilities are not obstacles to overcome but just represent alternative options. She created “Wendy on Wheels” to motivate children of all circumstances with her exciting adventures because Wendy reminds us all that there are no restrictions in life.

"Raising Awareness" ~Michigan Country Lines

Access the original article by clicking HERE.  See Page 8.  Photo by mL Photography

Michigan Country Lines                March 2011              Written by Courtney Gause