This Fall Nicholas started 4th Grade. It is still hard for me to believe he is also almost 9 1/2. An up date on Nicholas. He had not had a seizure for about 6 weeks which is the longest stretch he had gone for a while with out a seizure.

It has taken me about 6 months to update about Nicholas. But first I have many to thank in the past 6 months. NEW OPTN VIDEO CLICK HERE TO WATCH In March we had our 4th Annual OPTN/Bedford Mom’s Club easter Egg Hunt on March 31, 2012. It was a

Facebook link to OPTN.CURE   4th annual FORE! Nicholas Golf Tournament and Dinner Thank you to all our volunteers and golfers at this years FORE! Nicholas Golf Tournament and Dinner! Thanks to you the event was a huge success. Please see your photos in the links below, provided by Debbie

  THANKS to all the MOMs and our amazing community for coming out to support such a great event. We far surpassed last year’s totals for people attended and money raised!                   Click here for more web site to Mom’s Club Easter

SPONSORS AND ENTERTAINMENT ANNOUNCED FOR MOMS CLUB OF BEDFORD FOURTH ANNUAL EASTER EGG HUNT NH Sportsplex, IRA Lexus and Catholic Medical Center to Sponsor Charitable Event on March 31 to Benefit the Our Promise to Nicholas Foundation March, 2012 — Bedford, NH — The fourth annual MOMS Club of Bedford

February 29th, 2012 is RARE DISEASE day…….. We would like to honor children with a rare disease for this month like our son Nicholas who has batten disease (LINCL). The statistics around rare disease are astonishing. 1 in 10 Americans is affected by some type of a rare disease. That’s a huge

Happy New Year and welcome to 2012! I did not post in December because I was extremely busy getting OPTN holiday mailing out on time before Christmas. I mailed 950 letters. I like to think they are Nicholas’s fan club. I feel lucky that so many would be interested in

Happy Holidays 2011. This is the letter that I sent out to 950 + friends of Nicholas as our OPTN 2011 memories. . Thank you for your continued support and reading my web site…… It is hard to believe it is December 2011 already and at the year end. Even though it