Archives for April 2011

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...]

Fly Fly Butterflies…..

A few weeks ago we received an amazing gift from Cash's Nana Teri, Teri is an amazing SMA Grandma to Cash Goeppert. It was our very own butterfly garden, such a nice surprise and thoughtful gift. In a small container were five caterpillars with tons of food to munch!!!. We always read "the very hungry caterpillar" to Sophia so it was so much fun to show her the caterpillars and have her watch them eat and get bigger and bigger, just like in her story. Everyday we watched them squirm around and … [Read more...]

D-Day……. in other words Diagnosis Day

Two years ago today we got the news that Sophia has Spinal Muscular Atrophy Type 1.....I thought I would wake up today and feel defeated and sad, but instead I woke up bright an early to my daughters beautiful face and have never felt more alive.....I could sit here and write how heartbroken we were two years ago today but instead I will write how I feel today, we are at a place in our journey with SMA that is filled with so much Hope and Promise, we are on the brink of wonderful things to come. … [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 ┬ánewly 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...]

Charlottesville VA resident runs for Spinal Muscular Atrophy

I have known Joe Rice and the "Rice Family" for over 13 years now, they are more than just dear friends to me but they are my "second family" , they have always treated me like one of their own and when I introduced Vinny to them they immediately embraced him the same way!!! I consider Joe to be one of my best friends and when I called to tell him that Sophia was diagnosed with Spinal Muscular Atrophy (SMA) he was heartbroken, he immediately told us to set up a cause on Facebook about Sophia's … [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...]

Sophia’s milestones!!!

We were so excited a few months back to see that Sophia is able to tolerate being on a wedge for short periods of time, you see since Sophia has been six months old she could only tolerate being flat and her head to the side, other wise she would choke... but as she approached her second birthday we tried her on her therapeutic wedge and amazingly she was tolerating it. Of course we were nervous and monitored her at all times but she impressed us so much, we could also see she was enjoying her … [Read more...]

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