On February 11, 2009 Sophia’s Cure Foundation received their 501c3 public charity status. All donations received as of June 2009 are retroactively tax deductible. If you have made a donation and have not received a receipt, please contact us at sophiascure@aol.com.

The Cure SMA NY Gala which was held on November 12, 2009 was a huge success. OdysseyRe (www.OdysseyRe.com) and Hudson Insurance Group (www.hudsoninsgroup.com) were our main sponsors generously providing the dinner for the event. During the evening, OdysseyRe presented Vincent and Catherine Gaynor with a check for $50,000 for Sophia’s Cure. The night raised close to $70,000. The monies raised funded the motor neuron replacement program at the University of Irvine California and Columbia University SMA clinic.

In 2009, Sophia’s Cure has raised over $200,000 for the Motor Neuron Replacement, led by Dr. Hans Keirstead. Dr. Keirstead stated that the money raised by Sophia’s Cure has sped up the clinical trial by at least six months. Although Six months sounds like a short amount of time, it is astronomical when dealing with a disease where 50% of the children do not live past 6 months.

Sophia’s Cure Foundation was featured on several national radio and national television news stations, local and national radio stations and local papers.

On February 27, 2010 our beautiful Sophia turned 1. She has reached a monumental milestone and has already beaten the odds. She has achieved more in her first year than many do in a lifetime. In just ten months since her diagnosis Sophia has done so much for the awareness of Spinal Muscular Atrophy. She has been on national television, and radio, various newspapers and her story has reached tens of thousands of people. She has reached over 10,000 members for her cause on facebook and has raised well over $200,000 for cure based research. She has inspired a community, and returned hope to those that had lost it. None of us have a time schedule on how long we will be here, what truly matters in life is the impact you have on others. In Sophia's short life, she has already left a giant footprint on the world. Thank you for your thoughts and prayers for our angel.

WHATS NEXT

The next program that Sophia’s Cure is excited about funding is The Gene Therapy Program being run at OSU/ Nationwide here is a recent article:

http://researchnews.osu.edu/archive/s...

This is a wonderful and promising program as well. This program has shown the ability to actually cure the most severe animal model of SMA. The exciting news is that these results are showing the same translation in a much larger animal model. This program has currently moved into primates and is seeing some amazing results. This program is a gene replacement of SMN 1. Based on virus, and delivery approach this program seems to be easiest to gain FDA approval towards human clinical trials. The virus used to enter the motor neurons is similar to a common cold with the harmful side effects being removed.

Because this virus can cross the blood brain barrier it can be injected like an immunization. The big question that remains with this program is what is the window of treatment that patients can continue to see results from this therapy.? Will it be only the earliest patients treated in the very first days or will we be able to see results in older patients as well?

Brian Kaspar has released a statement for me to share with you. Here it is :

Based on positive pre-clinical studies using a gene therapy to treat a mouse mouse model of SMA, The Kaspar and Burghes Laboratories at Nationwide Children's Hospital and The Ohio State University initiated preliminary studies in non-human primates and have seen successful translation of the gene delivery approach in a larger species. These results have prompted a research and clinical team including Dr. Kissel, Dr. Kolb, and Dr. Mendell to be established to initiate a translational program for human clinical trials for SMA. Presentation of the data and the plans to rapidly move the program forward are forthcoming in the next several weeks.

I believe this research is another great program that holds the most promise moving forward and give our community as a whole the best chance of one day ending this disease.

Sophia’s Cure is planning some exciting fundraising events for summer of 2010 please stay tuned for further information to come.

We want to personally thank you all for your efforts and donations, without you we could never have achieved any of this success, we hope you will consider Sophia’s Cure Foundation for your 2010 charitable donations. to donate please visit www.sophiascure.com, or send to PO Box 601 N. Bellmore NY 11710. Thank you for your continued support.