Together we will find a cure……

Over the weekend we received a letter from the McCarthy Family. We met this family briefly when we were all at Avery's Race to Cure SMA...The McCarthy's have a beautiful Son with SMA named Braden...... To Sophia's Cure Foundation Our son Braden was born with type 2 SMA. On August 20th 2011 some friends of ours held a benefit dart tournament with Braden being the inspiration and guest of honor. The idea was spearheaded by a man by the name of Brian Pfeffer and he was joined by John Martyka to … [Read more...]

Thank you BW Unlimited

A few months back we were entered into a contest that BW Unlimited was having on their Facebook page. Because of the hard work of the SMA Community, our friends, family and faithful followers we took first place!!!! Your relentless voting everyday paid off and we cannot thank you all enough!!! Because we won 1st place we were able to choose from BW Unlimited's large selection of autographed items. After a lot of thought and feedback from the community we chose the autograhed Paul Mccartney … [Read more...]

Prepare for the Worst…….Hope for the Best

Our family recently experienced a very scary situation up here in the Northeast. About a week ago, Hurricane Irene was headed right for New York, and especially Long Island. As her approach grew closer, she was not changing her course for a direct hit on Long Island. The Island and City were well under way evacuating towns and warning residents that they would be closing bridges and tunnels. We as family have always been very proactive about having all the essentials for any kind of emergency … [Read more...]

Alert…Alert…..MEDICAL ID BRACELETS

This past weekend at the University of Wisconsin-Madison Hospital they had SMA EDUCATION DAY for Parents and caregivers, headed up by the amazing SMA PULMONOLOGIST DR. MARY SCHROTH. Dr. Schroth never ceases to amaze me in her constant efforts to bring SMA clinical care to the next level. While we are all pushing along promising research to treat and or cure SMA, she is keeping our kids healthy and up to date on all the clinical information for SMA!!! Unfortunately we were not able to attend … [Read more...]

Take Some Sunshine Vitamin!

It is hard to imagine with the intense summer heat that fall and winter will soon be here, and along with it all those nasty winter germs.  Although Krista was home-schooled, I always dreaded the start of each new school year because I knew it was only a matter of time before her siblings would be bringing home all sorts of respiratory bugs. In my quest to keep the entire family healthy, I became interested in reading and learning about Vitamin D3. It seems that this vitamin isn’t just a … [Read more...]

Wisconsin…..close friends, Spotted Cow and Cheese Curds

We returned Monday night from our incredible vacation. To be honest this past week we have spent absorbing the events of the week before. When we left Ohio we could not have imagined anything comparing to that experience but Wisconsin was so amazing in it's own right. So many things have changed for Sophia. Just last year we took the same trip to see Dr Schroth in Madison. We had to break up the drive and stop every 5 hours or so because it was tough on Sophia. We would see her become irritable … [Read more...]

Ohio….Friends, Families and a Researchers Round Table

We had been planning our cross-country trip for quite some time. Carefully reviewing every detail leading up to our departure date last wednesday. We were positive everything was under control........but like an episode of Big Brother and the shows mantra "Expect the Unexpected", we were in for a surprise! As Catherine was packing the van she closed the front passenger door and became startled. The rear passenger window shattered into a million pieces..............This was the largest window in … [Read more...]

Another awesome giveaway!

We are so happy to announce another spectacular giveaway! So many families have joined together on so many campaigns that they believe in. The Get every SMA KID an IPAD campaign just keeps rolling! Our dear friends Sandy, Matt, Emily, Cashel and Allie are on a mission! The Gardner/Barber family chipped in last time to help raise enough money for our last Ipad giveaway........and they didn't stop there. Sandy recently used her Birthday wish on Facebook to raise enough money for another IPAD. … [Read more...]

Fourth of July family fun….

We have been so busy lately gearing up for our upcoming road trip....Sophia is recovering wonderfully. It has been 1 month from her surgery and it really has become much easier, the first few weeks were tough, I dont want to lie, but she is settling in now and everything seems to have healed. The most important part is that Sophia is much more happier, she can see everything clearly and she is much more comfortable. We couldn't be happier with our decision to Trach Sophia, for her, this is a … [Read more...]

Working Together Has Made A Difference

Today is a monumental day for Spinal Muscular Atrophy. At the present time, together as a community, we have accomplished what many believed to be the impossible. To others, including my own family, I have pledged to raise astronomical amounts of money to fight this disease. Sometimes, even the closest members of my inner circle have become nervous with my promises..................But I have never doubted. I may not have known how we would accomplish the task at hand, but I was raised on the … [Read more...]

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