Archives for March 2011

Family Pictures….

A few months back I emailed Summerlyn of Summerlyn Photography and asked her if she could stop by on Sophia's Birthday to take some pictures, without blinking an eye she said YES!!! You may remember me talking about Summer, she is the amazing photographer who has photographed Sophia since she has been 7 days old!!! Thats right, Summer first starting working with us when my baby girl was 7 days old, sweet, innocent, before SMA, Since then I think we have adopted Summer or maybe she has adopted … [Read more...]

SMA Awareness night with the NY Islanders and Robbie Rosen

American Idol Blog American Idol Now The examiner Yahoo News ESPN NY Newsday … [Read more...]

Hat Trick for Spinal Muscular Atrophy-NY Islanders, Robbie Rosen and Sophia

Saturday March 26th 2011 was a defining moment for SMA. An evening where everything stopped and the story of our children took center stage. The New York Islanders went above and beyond what any other professional franchise has ever done for SMA. The generosity and compassion that was exhibited started well before face off on this night. Their commitment became evident over a month prior when they invited us to the arena to shoot a PSA for our disease. That public service announcement started … [Read more...]

Come on out and ZUMBA AWAY SMA!! A benefit to help Cure Spinal Muscular Atrophy.

Come on out Sunday May 1, 2011 at 10:30am to support The Sophia's Cure Foundation and Zumba Away SMA!!! Joanne Craven Rossiter was approached by a family friend over a year ago to put on this amazing event, and we are so happy she has jumped on board in our fight to help cure SMA. Joanne is considered one of the #1 Zumba instructors on Long Island and  has brought together her favorite colleagues to help fight SMA!! Thank you so much Joanne and BetUCanDance for putting on this incredible event. … [Read more...]

Our First Emergency room visit.

Catherine and I have always been very pro-active with the care for Sophia. Over the first 2 years their have been some really scary moments. We have always made choices as Sophia's parents as to the best course of action for our little princess. We have come very close to losing her .....but remained calm and continued to work on her and eventually brought Sophia's oxygen and heart rate back up. One of those instances was last May when we were returning from seeing Dr. Schroth  in Wisconsin. We … [Read more...]

The Path Forward

There is a program here that has the potential to stop the progression of the disease in more advanced subjects and actually cure the disease in newly diagnosed. Wouldn't it be nice IF another family never had to hold their child in their arms and watch them fade away.............IF another family never had to live every day wondering IF today is the last day for their child. Imagine IF we as parents never had to watch our kids progress in this disease, IF we did not have to watch as our child … [Read more...]

Stem Cell Research and Motor Neurons

It was important to us to do a blog on the current state of Stem Cell Research. We have witnessed the disappointment of many in the community based on the current "Clinical Hold" that has been put on the SMA clinical trial. It is important to point out The Sophia's Cure Foundation has supported and will continue to support Stem Cell Research. We believe Motor Neuron Research is part of the big picture in regards to Spinal Muscular Atrophy. Eventually Motor Neurons will have to be replaced to … [Read more...]

LaLaLoopsy……

Sophia's Aunt Terry came by Monday to see her favorite Niece!!!!!! We had such a fun day and Aunt Terry gave Sophia her favorite Birthday present of ALL....( even I had no idea about "LaLaLoopsy" ) !!!! You should have seen Sophia's eyes light up when she saw her new doll!!! We took it out of the box and laid down "Jewel Sparkle" in Sophia's arms and she just stared back and moved her fingers up and down!!!! We knew she was so excited!!!!! Thank you Aunt Terry for such a special visit and … [Read more...]

Gene Therapy and Initial FDA guidelines

We feel a responsibility to keep our donors informed on the programs we have funded and continue to fund. It is the critical funding that you provide that enables The Sophia's Cure Foundation the ability to support these programs. Recently there has been some confusion as to what is necessary to advance Gene Therapy  from the lab to the patient. We have released a note recently to update the SMA community: Based upon initial talks with the FDA, the FDA believed the proof-of concept studies … [Read more...]

Spinal Muscular Awareness Night with the NY Islanders….Thank you Philips Respironics

A huge thank you to Philips Respironics for coming in with their Bronze Sponsorship for this event. Philips Respironics was one of our sponosors for the CURE SMA NY Gala and we are thrilled to have them on board for this fun SMA Awareness night. Remember March 26 is only a few weeks away so buy your tickets now for this incredible night!!!!! … [Read more...]

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