Archives for February 2011

On Her Terms

Yesterday was a very emotional time for our family. The second birthday of an SMA child is a huge milestone.......one that we are all told we will never see. I am so grateful to the countless families who have helped us along through Sophia's journey with Spinal Muscular Atrophy. We have learned so much from SMA families who have Type 1 children who were beating the odds. It was these parents who have assisted us in finding the best care for Sophia. I am forever thankful for your support, it has … [Read more...]

Gene Therapy for Spinal Muscular Atrophy UPDATE

One of the Programs we have funded and are excited about is the SMA Gene Therapy program using the AAV9  Vector (Intravascular Delivery). The Sophia's Cure Foundation has great faith in the very promising work being done at Nationwide Children's Hospital and Ohio State University. The Team consisting of Lead Researcher Dr.Kaspar , Dr. Burgess, Dr. Kissel as well as Dr Mendell is second to none. The experience of Dr. Jerry Mendell working with the FDA  in advancing programs from Proof of Concept … [Read more...]

Exciting times for Spinal Muscular Atrophy

The start of this year has been nothing short of remarkable for all of us in the SMA community. 2011 has brought so much hope from basic research to awareness. Today we as a community are standing on the doorsteps of what could be a defining moment for SMA. Many of us have believed that if we could find a celebrity to support our disease we could finally establish Spinal Muscular Atrophy amongst the general population. We are hopeful that now is that time...... During  the Presidential … [Read more...]

Sophia’s turning TWO final Birthday GIVEAWAY!!!!!

In less than one week our little miracle will be turning TWO!!!! We feel so blessed and so lucky we want to share this joy with everyone all month long....So the final prize is............we have decided to giveaway an IPAD, for Sophia the IPAD has been an incredible resource and to stick with the theme (of Sophia turning two) we have decided to giveaway......................................... TWO IPADS!!!!! This Giveaway is from us and completely separate from the Ipads for SMA Kids campaign. … [Read more...]

Hope for Charleston Event a Huge Success!

I have always been impressed with the Goeppert family. I have been amazed how quickly Cash's mom Ashley was able to grasp the different options for Spinal Muscular Atrophy, and to apply them to provide Cash the best possible care. I love the way Cash is included in everything they do. I must admit sometimes I find myself learning from them, new ways to keep Sophia stimulated. It goes to show we are advancing as a community.  I am honored to know this family. Teri is Cash's super grandma. She … [Read more...]

Princess Sophia Teams Up with NY Islanders Trevor Gillies

Sophia knew this was a special day.....when she awoke bright and early she was in an incredible mood. Sophia was smiling the whole time  as we were getting her dressed for the special occasion. She patiently waited as we fed Jackson and got him ready but you could feel she was anxious. She could not wait to get to the Nassau Coliseum. Today she would shoot her Public Service Announcement with the NY Islanders for the SMA Awareness Night  on March 26th. When we arrived at the Coliseum we were … [Read more...]

Spinal Muscular Atrophy Mathematics-A Novel Theory

Understanding a disease as complex as Spinal Muscular Atrophy at times can become overwhelming. SMA parents contribute the majority of their  time during the day caring for their children. The research side of SMA has become my passion. So how can an SMA dad who is a construction worker by trade really understand research? Well throughout my life there were always two subjects I loved........Math and Science. I chose to become a construction worker because it was a much better living than what … [Read more...]

Valentine Surprise from Dada…..

Vinny was up early and out the door, Sophia and I knew he was up to something....hmmmmmm after I finished treatment and got Sophia ready, daddy appeared in her room bearing gifts....VALENTINE GIFTS!!!! Sophia was so excited and wide eyed to see all her gifts from her Valentine, Vinny is so good at making Sophia feel included in EVERYTHING....he gently sat on the bed and asked Sophia if she would be his Valentine, (of course she said YES) then they proceeded to go through not one but two … [Read more...]

Giveaway Number 2 for SOPHIA’S second Birthday!!!!

Ok time for another giveaway in honor of Sophia's second Birthday coming up on February 27!!!! We are celebrating this incredible milestone all month long!! Ok are you ready for this one!!!! We will be picking 2 winners for this, to keep with our theme (2), :) Sarah from SayWhat Creations (creator of the SMA Awareness Jewelry line )is so generous and has offered not one but TWO $22 gift certificates for us to GIVEAWAY!!!! Ok so here is how it will work, entries to win will start today Feb 14 and … [Read more...]

We will make it through together

I heard the beep of a call waiting  and without checking to see who was calling I picked it up. Things have been.......well a little hectic to say the least. The constant communications with ongoing  fundraisers, Sophia's upcoming monumental milestone, assisting newly diagnosed families, work, and of course making time for my wife and two beautiful children has kept me extremely busy. At times it seems a little overwhelming.........but in such a good way. It turns out it was a person who is … [Read more...]

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