Archives for June 2011

Oct 21, 2011 Golf Event benefitting SCF in honor of Nathan Banjany…..

SCF is so excited about the upcoming Golf Event hosted by GMM Consulting, Cuhaci and Peterson, Kimley-Horn and Associates Inc and Terracon.  We cannot thank them enough for supporting SMA. Come on out and join us Friday Oct 21 at Huntington Hills Golf Club in Lakeland FL. Tons of sponsorship opportunities.... For more information or to register online click here. Hope to see you all there!!!! … [Read more...]

What is the Amino Acid Diet?

What is the Amino Acid Diet? By: Mary Bodzo This information is based on opinions and experiences compiled from parents of children with SMA and should not necessarily be relied upon as an alternative to medical advice from professional healthcare providers. ABOUT THE DIET The Amino Acid Diet is a nutritional approach that many SMA families believe has had a positive impact on their child's quality of life. Using this dietary approach, milk and soy based formulas are eliminated and … [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...]

On the Amino Acid Diet…

Thank you so much Vincent and Catherine Gaynor for providing me with this opportunity to share information based on my experiences with diet and SMA. Because there has been so much recent discussion about the Amino Acid (AA) diet for SMA patients, for my first blog post, I decided to give a little background on the origins and evolution of the diet. My daughter, Krista, was diagnosed with SMA type 2 at 8 months. She never crawled, stood, or walked. I always had concerns about her nutrition … [Read more...]

Starting our Life with a Trach……

Sorry we have not been around for a while, but as you all know we had decided to Trach Sophia. We had everything scheduled for monday, but last thursday evening Sophia suffered a massive bloody nose and was rushed to the ER that night. We were able to stop the bleeding but decided she needed the surgery earlier rather than wait. So Last Friday they wheeled our little girl down to the Operating Room....I was trying to be so brave for her and smiling at her at telling her "no more mask" but right … [Read more...]

June 4th Come on out to IceWorks and support SCF

We are so honored to have received the following news, "Iceworks Skating Academy proudly presents its 5th Annual Spring Fling Ice - Hooray For Hollywood!  Each year, the Iceworks Skating Academy puts on 2 skating recitals - a Holiday Ice Show and a Spring Fling.  And for each show, we donate all proceeds to a charity that hits close to home.  This year all the proceeds from the Spring Fling will be donated to Sophia's Cure.  The show will be on Saturday, June 4th at 7:30pm, held at Islanders … [Read more...]

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