Amazing Night at The Calhoun High School Talent Show!

The other night we received a phone call from Lauren Rosen. Lauren Rosen is the mom of Robbie Rosen. Many if not all of our followers know about Robbie. The entire Rosen family has become very near and dear to our family. Mrs. Rosen and I were talking on the phone and said she had a surprise... A surprise?????????? What more could this family have done I wondered. They have already done so much!!!! I am forever grateful for their efforts and their friendship. Well Mrs. Rosen says" There is a … [Read more...]

Prendiz Family’s Charity Fundraising SMA Gala in California!

Since we have launched our SMA Kids campaign we have literally been overwhelmed with so many upcoming fundraisers that are currently in the works. It has been amazing to see how many families believe in our mission and the momentum is spreading. It would be easy to focus on the past but we prefer to focus on the future! And the future looks bright! We have been approached by at least 5 separate families who want to fundraise in honor of their children all from the Sunny state of California! One … [Read more...]

Long Island Fortune 52 Honors Catherine!

I want to first start this post by asking for prayers for Sophia's friend Mary Nelson. Mary has Type 1 SMA just like Sophia and is currently in the Picu having seizures and is unresponsive. Please keep Mary in your thoughts and prayers. Two weeks ago I was on the construction site and received a phone call from a number I did not recognize. Usually I would just ignore the call and continue on with work. On this day for some reason I decided to answer. It was a woman by the name of Beverly … [Read more...]

SMA Gene Therapy

As you all know most of our fundraising lately has been going to the amazing Gene Therapy program for SMA coming out of OSU/Nationwides childrens hospital.....we were so honored when one of the researchers, Dr. Brian Kasper asked to meet our family and especially Sophia. Dr. Kasper was in NY last week for a conference at Columbia and was so generous to spend some time with us on thursday. He was also very gracious to agree to do a video recorded Q/A session.....we asked the SMA community to … [Read more...]

SMA Parents

I said it once I will say it again, I hate SMA, I hate what it does to my daughter, but I love Sophia with all my heart, and the SMA Parents and families I have met along this journey are some of the most courageous, understanding, patient and kind people I have ever met. I love every single person in my SMA Family and I am proud to be taking this journey with you all... Today I was having a blah day, its rainy here in NY which doesnt help my yucky mood, but surpisingly I got a knock at the … [Read more...]

Dr. Schroth visits Sophia…in NY

What an amazing Sunday we had today.....Vinny has been working on getting The amazing Dr. Schroth to come to our area to speak to families since last April. Dr. Schroth happened to be attending a conference at Columbia Hospital in NYC this weekend and arranged to come to our home on Sunday.....(How cool is she) when we heard this we immediately wanted other local families to benefit from her awesomeness and opened our home up to whomever was interested, we were so happy and honored to have the … [Read more...]

Where have we been

I cannot believe it has been a few months since I have updated Our life with Sophia and SMA....well its all for a Great reason, On Agust 5th 2010 our son Jackson Vincent came into the world....we are absolutely in love, and so happy that Sophia has a little brother...Jackson is SMA free, which means he is not even a carrier for the disease.....and a part of me is happy he will never have to worry about this awful disease. Sophia NOW loves her little fiesty brother, at first I believe there was … [Read more...]

Spinal muscular atrophy research team receives Pepsi Refresh funds from Sophia’s Cure Foundation

Nationwide Children's Hospital receives $250,000 grant for SMA research Brian Kaspar, PhD, principal investigator in the Center for Gene Therapy at The Research Institute at Nationwide Children's Hospital, along with a team of Spinal Muscular Atrophy (SMA) researchers and clinicians, recently received a $250,000 grant for SMA research and clinic development from Sophia's Cure Foundation via the Pepsi Refresh Project. Spinal Muscular Atrophy (SMA) is a group of inherited debilitating … [Read more...]

Start saving lives of children affected by Spinal Muscular Atrophy

This project finished in the top 2 in July, 2010. Sophia's Cure Foundation was awarded $250K! View our Pepsi Refresh Project page. There is true hope for SMA. The NIH has listed SMA as the Neurological disease closest to a cure, and as a gateway to curing other diseases. The research is so close that it could be in time to save the lives of many children. Unfortunately it is known as an Orphane disease and does not recieve enough money from companies. It would not be profitable for many … [Read more...]

Wonderful things

Sophia’s Cure Foundation has had some wonderful fundraisers going on in the past months. We would like to thank all the families who have reached out to us wanting to support and who believe in our small organization. When Vinny and I first discussed starting a foundation in honor of Sophia, we knew the two most important things to us was funding research that was based on CURING SMA and helping SMA Families. Thank you to the following organizations and families for their generous … [Read more...]

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