Many articles on Spinal Muscular Atrophy…..What do they Mean?

It seems that every day, there is an unending supply of new articles posted on the web regarding Spinal Muscular Atrophy. Some articles are great...........some are horrendous...some posts seem to be unintelligible while many seem to contradict one another. While some still are very well written, but they may only be a partial view of a program which could lead to misinterpretation of the data. We try to stay as up to date on the research as possible.........Our little secret......yup we are … [Read more...]

Fundraising for Spinal Muscular Atrophy and other diseases

In diseases that are as devastating as Spinal Muscular Atrophy and others, fundraising can quickly become the priority for those who are  newly diagnosed. In what has become a highly competitive arena, new tools are created to attract new donors. At conferences across the country specific sessions are held to teach families how to become more effective in their fundraising ventures. These are all very important components of any disease community. These programs help to advance research and … [Read more...]

Bowling for a CURE!!!! June 5, 2011

We are so honored to be one of the charities chosen to benefit from this FUN, FUN event....Our Friends at Stop & Shop are putting together an awesome event benefitting The Sophia's Cure Foundation and Kaylee's Heart Foundation. Come on out Sunday June 5th from 2-5pm (registration begins at 1:30pm) to Farmingdale Lanes. $25 per person (children under 12 $20) Free Rental Shoes, Pizza and Soda, 3 Hours of Bowling Fun and Excitement. There will be great prizes offered through a variety of … [Read more...]

IPAD Generation 2 Giveaway!

This year..... has been nothing short of INCREDIBLE for The Sophia's Cure Foundation. Together we have blown the doors off of 2011. The community support has grown exponentially and has been nothing short of AMAZING!!!!! We are so thankful to all of you............our supporters who have believed in us and our path forward for SMA. We have been able to conceptualize new fundraising and support programs for the SMA community while maintaining a 100% volunteer status. When we started The 200 … [Read more...]

Sophia’s First Words

I have always known Sophia to be extremely intelligent. The difficulty for me as her father has been the frustration of trying to prove her abilities to others. Sophia has always been able to communicate to us by the different tones she uses with her voice. To others listening to her I can understand how the sounds and pitches Sophia makes may just seem to be meaningless noise. To me one sound means "change my diaper", other sounds can mean "the battery on my DVD is flashing can you plug it … [Read more...]

Avery’s Race to Cure SMA …July 23 2011

This event is fast approaching, The Pitzen Family started Avery's Race to Cure SMA in 2010 and was a huge success, this event raised $20,000 for SMA!!! And the Pitzen's are at it again, The 2011 event will be in Lancaster Wisconsin-Grant County Fairgrounds on July 23, The Pitzen's will also be hosting a SMA Family supply swap/meet and greet the night before "Any SMA families that are planning on coming to Avery's Race to CURE SMA on July 23,Or that are gonna be in Wisconsin to see Dr. Schroth … [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...]

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...]

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