Archives for October 2010

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...]

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