Thank you for VOTING for SOPHIA……

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...]

Vote For Sophia!!!

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...]

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...]

Sophia’s Cure featured on FIOS 1 “Heroes on Long Island”

Heroes on Long Island features Sophia's Cure Foundation … [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...]

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...]

Aug 20, 2011 Hope For Charleston Spaghetti Fundraiser

Local Volunteer Firefighters located in the Reno Nevada area, are participating together to hold the “Hope for Charleston” 2nd Annual Spaghetti Feed 2011. Saturday, August 20 from 3pm to 9pm we will host a Spaghetti dinner, live music, games and face painting, bounce houses, dunk tank, raffle/silent auction and a static display of fire trucks along with the members. Adults are $10, kids $5 or a family pack (2 adults 2 kids $25) New to our event this year will be a Luminary Bag Ceremony and … [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...]

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