Hope for Charleston Event a Huge Success!

I have always been impressed with the Goeppert family. I have been amazed how quickly Cash's mom Ashley was able to grasp the different options for Spinal Muscular Atrophy, and to apply them to provide Cash the best possible care. I love the way Cash is included in everything they do. I must admit sometimes I find myself learning from them, new ways to keep Sophia stimulated. It goes to show we are advancing as a community.  I am honored to know this family. Teri is Cash's super grandma. She … [Read more...]

Princess Sophia Teams Up with NY Islanders Trevor Gillies

Sophia knew this was a special day.....when she awoke bright and early she was in an incredible mood. Sophia was smiling the whole time  as we were getting her dressed for the special occasion. She patiently waited as we fed Jackson and got him ready but you could feel she was anxious. She could not wait to get to the Nassau Coliseum. Today she would shoot her Public Service Announcement with the NY Islanders for the SMA Awareness Night  on March 26th. When we arrived at the Coliseum we were … [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...]

We will make it through together

I heard the beep of a call waiting  and without checking to see who was calling I picked it up. Things have been.......well a little hectic to say the least. The constant communications with ongoing  fundraisers, Sophia's upcoming monumental milestone, assisting newly diagnosed families, work, and of course making time for my wife and two beautiful children has kept me extremely busy. At times it seems a little overwhelming.........but in such a good way. It turns out it was a person who is … [Read more...]

Fortune 52 Honoree dinner

Last Monday I attended the dinner Honoring myself and 10 other women who have done exceptional work in their community. Every story I heard was more amazing then the next and felt as if my work is nothing compared to the amazing accomplishments these women have achieved. I was so honored to be included in such exemplary company and so happy to have met some new friends. I get so wrapped up in the day to day battle with SMA, that you dont realize so many people are fighting a fight, maybe not SMA … [Read more...]

Sophia’s is turning 2…. Birthday Giveaway

We are soooo excited for Sophia's Birthday coming up, in 22 days!! We feel so blessed and so grateful that our little miracle is turning 2!!!!! We just want to celebrate all month, and because we feel so blessed we would like to give back.....so this giveaway is so much fun, Larkie Lu Bows will be giving away the signature "Sophia's Cure Bow" AND a custom bow of your liking to the winner. How do you enter: 1. Comment under this post 2. Go to Larkie Lu Bows fanpage and leave a comment  … [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...]

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...]

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