We were deeply saddened by the loss of Diana Casares this past week. Diana was almost two years old and had SMA Type 1 like Sophia. the Casares's lived very close to us here in NY, and our families had become close friends ....Though Diana was not here very long, she made a huge difference to the SMA Community here on Long Island. Since Sophia's diagnosis Vinny and I struggled to find a local hospital that would be "on board" with the SMA protocol......over the years we heard horror stories … [Read more...]

I love Christmas....I love the decorating, the music the baking.......and as a child one of my favorite parts about Christmas season was going to see Santa!!!! I never thought this would be possible with Sophia...until yesterday....another blessing about having her Trach.....We decided last minute to head on over to Hicks Nursery in Westbury, I heard they had a Santa with reindeer and an animated Christmas walk through.  So I dressed Sophia in her special "going to meet Santa outfit" and we all … [Read more...]

We recently had another amazing photoshoot with Summer lyn of Summerlyn Photography.....Summer has been part of our lives since Sophia has been 7 days old, and has blessed us with amazing photos for us to treasure always. Since Sophia's Trach surgery we have been feeling a bit more adventurous and decided to take this particular photoshoot to the beach!!!!! Sophia is like her mamma and loves the beach, the water the sand, listening to the waves...she is definitely  a water baby :)...Of course … [Read more...]

We were contacted today by one amazing person, who has learned about SMA through following the journey of one amazing SMA kid..... Charleston Goeppert. This "person" who wants to remain anonymous, has been following Cash's SMA Journey ..Hope for Charleston... and was so inspired by him that they wanted to do something to honor his upcoming 2nd Birthday!!!!!!!!!!!!! This person will be donating the proceeds for an IPAD for an SMA KID in honor of Cash's second birthday!!!!!!!!! This literally … [Read more...]

We are so excited to be giving away another IPAD!!!!!! This all became possible after we were entered into the Respironics contest....because of the overwhelming support for SCF they have generously donated the proceeds for this giveaway. Ok so enough already ...right!!!! Lets get on with this giveaway!!!! Here are the eligibility requirements: 1) There must not be an IPAD in the HOME 2) For SMA Kids/adults only Soooooo how to enter: 1) Comment on this blog post below please include … [Read more...]

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...]