September 10, 2011

Hello! Wow what a ride we have been on lately. As the country mourns the loss of those on 9/11, I am realizing our blessings of the past few months. We have participated in and won, yet another Facebook game. We entered the Vivint Gives Back promotion. Team Sanfilippo Foundation was incorporated in New York, so we entered in the Eastern division and won $100,000 to go torward research! These types of contests are wonderful for a group such as ours. First, we all live in different parts of the world, so this way we can come together as a community and make a huge impact together. Secondly, fundraising is difficult and time consuming, we can earn a huge amount of money in a short time. The Vivint Gives Back project is so unique, in the fact that their employees give this money. They donate commissions and part of their paychecks to give back and Vivint matches those gifts. Me, Kathy Buckley and Carl Kapes had the great priveledge of flying to Utah to accept the check and speak to the amazing people who gave of themselves to make this happen. We are truly blessed! Right now the area of research for Sanfilippo syndrome is accelerating, on the horizon we have enzyme replacement therapy, gene therapy and inhibitors that are being studied and close to the realization of a treatment for our children. We need time and money...time we cannot give but we are trying our best to study treatments that could help our kids right now, so they they remain healthy enough to receive the cure when it comes along! Money, we are making great strides as our community comes together for the cause!

During all of this Facebook event, we participated in a local fundraising event. The Macy's Shop for a Cause event. Macy's allows local charities to sell a discount card for $5.00 allowing the purchaser a day of discounts in the store. We sold about 30, the store asked us if we would like to participate by selling the discount cards in the store. Nicole and I set up on our small table, at the entrance ,with our foundation brochures and the discount cards. The first hour of our 4 hour commitement started off without much enthusiasm. I began my..."Would you like to purchase a....."NO" ... Nicole being a sensitive 11 year old was becoming increasingly offended by the acts of rejection. She actally felt offended as though the customers did not care about her brother. I assured her things would get better. A few customers purchased the card but did not ask anything about our cause. As with most of these events, I am left feeling so blessed by the end. A day that I thought would be selling a few cards, turned into an emotional uplifting of my spirits. Two women, on this day, touched my emotions so deeply. One sweet woman was a Physical Therapist and was intrigued and wanted to learn more, she left a $50.00 donation. I explained the condition and circumstances of the future for our children and she was truly moved by our plight. Another, young woman purchased a ticket, took a brochure and walked away. About an hour went by, she showed back up at our table with a check in her hand folded, she quietly said, " you need this more than I do" I thanked her and after she walked away, I unfolded the check for $100.00...don't get me wrong I do not look at people as dollar signs or what they can do for me...it was the emotions and understanding that these two women represented. Their kind jestures are more than a donation, they are pure and simple acts of human kindness.... Thanks to all of you who support us, pray for us, vote with us and offer a small word or jesture of kindness torward us in our time of need. These are truly acts of good will toward men.

As always thank you for your support and please, continue to pray for a cure.

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