Gene Therapy’s Major Anonymous DONOR touched by AVERY”S BUCKET LIST

Today is a day of both overpowering grief and overpowering hope in the SMA Community. As we described in our previous blog post, beautiful Avery Lynn Canahuati, of "Avery’s Bucket List" passed away yesterday at just 5 months old. In their latest blog, the Canahuati family asked that donations be made in Avery’s honor to Sophia’s Cure Foundation to help fund Dr. Kaspar’s gene therapy program, which will be headed to human clinical trial by late 2012 or early 2013. As many of you in the community … [Read more...]

SMA IT FORWARD

Super SMA KID Cashel will be turning 16 soon, he took it upon him self to start SMA IT FORWARD......He is hoping his Facebook page will reach 1 million likes by the time he turns 16....So lets get out there and get our friends and family to make this happen. and Sharing is caring :) CLick here and like  SMA IT FORWARD.... We are pulling for you Cashel. … [Read more...]

The Spinal Muscular Atrophy (SMA) Communities “Bucket List”

The time has come to thank the many families and groups that have come together as part of the 200 commitments for SMA. Your efforts have pushed a program forward at a pace that has rarely been seen in our disease community. The community should be extremely proud of what they have been able to accomplish. Last year at a research conference I remember a representative of a panel state that a smaller organization could never fund any of these programs to the clinic. With your support.........we … [Read more...]

How do you measure a year?….

I would like to start this post by thanking everyone who believed in our family, all of you who believed in The Sophia's Cure Foundation and who have believed in the programs we have funded. 2011 was such an amazing year for our organization..............but in all honesty, I was looking past 2011 all year long because I knew what was in store for our children and family members who have been touched personally by Spinal Muscular Atrophy. To be quite frank.......I have been looking past this … [Read more...]

August is SMA AWARENESS MONTH……..

August is SMA AWARENESS month, and Sophia's Cure along with so many other SMA organizations works so hard to teach more and more people about Spinal Muscular Atrophy (SMA),  we have always believed we all can accomplish more by working together, "A dream you dream alone is only a dream. A dream you dream together is reality."  So we want to make sure all our supporters know about the amazing events going on this month and beyond that support SMA. These events spread from the East coast to the … [Read more...]

Wisconsin…..close friends, Spotted Cow and Cheese Curds

We returned Monday night from our incredible vacation. To be honest this past week we have spent absorbing the events of the week before. When we left Ohio we could not have imagined anything comparing to that experience but Wisconsin was so amazing in it's own right. So many things have changed for Sophia. Just last year we took the same trip to see Dr Schroth in Madison. We had to break up the drive and stop every 5 hours or so because it was tough on Sophia. We would see her become irritable … [Read more...]

Ohio….Friends, Families and a Researchers Round Table

We had been planning our cross-country trip for quite some time. Carefully reviewing every detail leading up to our departure date last wednesday. We were positive everything was under control........but like an episode of Big Brother and the shows mantra "Expect the Unexpected", we were in for a surprise! As Catherine was packing the van she closed the front passenger door and became startled. The rear passenger window shattered into a million pieces..............This was the largest window in … [Read more...]

Working Together Has Made A Difference

Today is a monumental day for Spinal Muscular Atrophy. At the present time, together as a community, we have accomplished what many believed to be the impossible. To others, including my own family, I have pledged to raise astronomical amounts of money to fight this disease. Sometimes, even the closest members of my inner circle have become nervous with my promises..................But I have never doubted. I may not have known how we would accomplish the task at hand, but I was raised on the … [Read more...]

Daddy I’m ready…………..

At night I lay in bed with this little girl, holding her hand, simply amazed at how much I love her. How could you ever know before becoming a parent how your heart could grow, and grow ....and grow every day, consumed with so much emotion. As Sophia's dad I have learned so much about life from this precious little package. There is not a single thing in this world that I would not do for my family. Today I have learned that sometimes you have to nudge your heart out of the way in order to make … [Read more...]

ZUMBATHON JUNE 11 to help Cure SMA

We are all so excited for this next ZUMBA EVENT!!!!!!!! Dont miss out, register today.... Hosted by Terry Gaynor in Honor of Sophia Barbara Gaynor diagnosed with SMA Type 1 Zumba instruction by Gilly Lugo, Daisy Bugarin Zumba Education Specialist from Los Angeles CA, Yudelka Canela, Lupe Calderon founders and owners of Brooklyns finest zumba studios ; Y & L fitness and DJ by Dino Georgakapolus 11:30 .....Location St. Sebastian Parish Center - 2nd Floor Gym 39-60 57th … [Read more...]

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