Archives for January 2011

March 26, 2011 – SMA Awareness night with The NY Islanders

Come on out to this incredible event benefiting Spinal Muscular Atrophy. The New York Islanders are teaming up with The Sophia's Cure Foundation to raise awareness and funding for Spinal Muscular Atrophy. A portion of every ticket sale will be donated to The Sophia's Cure Foundation. Anyone who purchases tickets for this game through The Sophia's Cure Foundation will be entitled to an exclusive open skate session on Nassau Coliseum Ice for the entire family following the game, bring your own … [Read more...]

Robbie Rosen – American Idol

We are so excited for our friend Robbie Rosen who was on American Idol Last night and has made it to the Hollywood rounds. You may remember Robbie, a few months ago we told you about this amazing 16 year old kid from our town who heard about Sophia over a year ago and was so touched he wrote the SMA Anthem “Make it Through” in less than 24 hours to help us spread sma awareness. Robbie is not only an amazing vocalist but a wonderful kid and we wish him nothing but the best. We really hope you all … [Read more...]

Loving Sophia’s Arm Slings

A few weeks ago Vinny had written a Facebook post asking for information on Arm Slings. We can do alot here but neither of us can sew. Slings are so helpful for SMA kids, it helps them do so many things they normally may not be able to....Sophia can use her IPAD almost independently while in her slings.... We were so happy by the responses we received of many families offereing to help make them for us. We received two wonderful packages, one came from Teri (Cash's Grandma). She made Sophia the … [Read more...]

July 23, 2011 – 2nd Annual Avery’s Race to Cure SMA

The Wonderful Pitzen Family is at it again! The 2nd Annual Avery’s Race to CURE SMA is set for Saturday July 23rd, 2011. This year it will be held at the Lancaster fairgrounds. In AIR CONDITIONING! The walk and rubber duck race will still be outside though. The walk will loop down through the park to the creek for the duck race then continue back to the fairgrounds for the auctions,food,games and fun! Hope to see you there! Last Years event raised a whopping $20,000! Way to go Avery! … [Read more...]

Hope for SMA Gala

I had the incredible opportunity of working with the Inspiring Prendiz Family on the Hope for SMA Gala. The Prendiz family organized the entire event and the night could not have been more perfect. The Hope for SMA Gala was held in memory of beautiful SMA Angel Hannah Rose on her second birthday. The event was held to bring HOPE for all of the families who have lost a child to SMA and to the families who currently are living with Spinal Muscular Atrophy. Dr Brian Kaspar was in attendance and … [Read more...]

“Momma Love” by Ali Smith

I am sitting here on my couch my makeup has smeared, my eyes are swollen, there is a slight lump in my throat, Ali Smith has just left my home....she came to spend the morning with Sophia and I to take pictures and interview me for a book she is working on called MOMMA LOVE.....this was more to me than a photo shoot, Long after the pictures were taken... Ali and I quietly went into Sophia's room and sat on the bed like "girlfriends" ready for a chat session......she quietly placed her recorder … [Read more...]

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