We are so overwhelmed with everyones support in the recent Respironics contest. We received an email today that Sophia's video came in 2nd place!!!! Though the contest stated only 1st place would win the prize, Respironics was absolutely floored by the support for Sophia's Cure , and have generously decided to donate proceeds for an IPAD!!!! We are so excited that we are able to give away another IPAD to an SMA Kid!!! Thank you again for supporting us and for voting for SCF!!!!! Stay tuned for … [Read more...]

We are excited and honored to be in the running for Respironics "Partners in Ventilation" Please click here and Vote for Sophia's Video and share with your friends and family. We appreciate all the support. Voting ends Oct 28 ...Any prize money will be used to purchase IPADS for SMA Kids....Thank you for your continued support!!!! VOTE FOR SOPHIA … [Read more...]

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...]

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...]

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...]

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...]

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...]

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...]