Sophia’s milestones!!!

We were so excited a few months back to see that Sophia is able to tolerate being on a wedge for short periods of time, you see since Sophia has been six months old she could only tolerate being flat and her head to the side, other wise she would choke... but as she approached her second birthday we tried her on her therapeutic wedge and amazingly she was tolerating it. Of course we were nervous and monitored her at all times but she impressed us so much, we could also see she was enjoying her … [Read more...]

Family Pictures….

A few months back I emailed Summerlyn of Summerlyn Photography and asked her if she could stop by on Sophia's Birthday to take some pictures, without blinking an eye she said YES!!! You may remember me talking about Summer, she is the amazing photographer who has photographed Sophia since she has been 7 days old!!! Thats right, Summer first starting working with us when my baby girl was 7 days old, sweet, innocent, before SMA, Since then I think we have adopted Summer or maybe she has adopted … [Read more...]

Come on out and ZUMBA AWAY SMA!! A benefit to help Cure Spinal Muscular Atrophy.

Come on out Sunday May 1, 2011 at 10:30am to support The Sophia's Cure Foundation and Zumba Away SMA!!! Joanne Craven Rossiter was approached by a family friend over a year ago to put on this amazing event, and we are so happy she has jumped on board in our fight to help cure SMA. Joanne is considered one of the #1 Zumba instructors on Long Island and  has brought together her favorite colleagues to help fight SMA!! Thank you so much Joanne and BetUCanDance for putting on this incredible event. … [Read more...]

Gene Therapy and Initial FDA guidelines

We feel a responsibility to keep our donors informed on the programs we have funded and continue to fund. It is the critical funding that you provide that enables The Sophia's Cure Foundation the ability to support these programs. Recently there has been some confusion as to what is necessary to advance Gene Therapy  from the lab to the patient. We have released a note recently to update the SMA community: Based upon initial talks with the FDA, the FDA believed the proof-of concept studies … [Read more...]

Spinal Muscular Awareness Night with the NY Islanders….Thank you Philips Respironics

A huge thank you to Philips Respironics for coming in with their Bronze Sponsorship for this event. Philips Respironics was one of our sponosors for the CURE SMA NY Gala and we are thrilled to have them on board for this fun SMA Awareness night. Remember March 26 is only a few weeks away so buy your tickets now for this incredible night!!!!! … [Read more...]

Sophia’s Big Girl Room

When we became pregnant with Jackson, we immediately started thinking about the fact that we live in a 2 story home where on the first floor there are only two bedrooms.....of course when Vinny and I bought our home we never imagined SMA would prevent us from using our upstairs space. We quickly had to think of a solution for our princess, Vinny immediately decided to turn our Garage into Sophia's "Big Girl Room"!!! In May of Last year the "Princess room project" began. Vinny did most of the … [Read more...]

Valentine Surprise from Dada…..

Vinny was up early and out the door, Sophia and I knew he was up to something....hmmmmmm after I finished treatment and got Sophia ready, daddy appeared in her room bearing gifts....VALENTINE GIFTS!!!! Sophia was so excited and wide eyed to see all her gifts from her Valentine, Vinny is so good at making Sophia feel included in EVERYTHING....he gently sat on the bed and asked Sophia if she would be his Valentine, (of course she said YES) then they proceeded to go through not one but two … [Read more...]

Giveaway Number 2 for SOPHIA’S second Birthday!!!!

Ok time for another giveaway in honor of Sophia's second Birthday coming up on February 27!!!! We are celebrating this incredible milestone all month long!! Ok are you ready for this one!!!! We will be picking 2 winners for this, to keep with our theme (2), :) Sarah from SayWhat Creations (creator of the SMA Awareness Jewelry line )is so generous and has offered not one but TWO $22 gift certificates for us to GIVEAWAY!!!! Ok so here is how it will work, entries to win will start today Feb 14 and … [Read more...]

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