The Fragile X Trials are now in session!

FALL X BALL OCTOBER 18, 2013 “Dripping water hollows out stone, not through force but through persistence.” -- Ovid In the summer of 2003, our journey to find a cure for Fragile X Syndrome began. Our hope was to raise awareness and funds to support research. Ten years later we learned that drug trials for Fragile X Syndrome were beginning. We are thrilled to share that Niklas is currently participating in a clinical drug trial! While fundraising for ten years and having Niklas begin a drug trial are huge accomplishments, we feel we still have some unfinished work to do. Our newest goal is to raise 1 million dollars for FRAXA Research. Since 2003 we have raised approximately $800,000! The outpouring of support we continue to receive humbles us, but we feel there are still people who have never heard of Fragile X and more awareness is needed. We also want to provide a variety of opportunities for our supporters to share our cause with their own acquaintances, friends, neighbors, family, etc. In response to these needs, we hosted a wine dinner this past spring at Trump National Golf Club ~ Hudson Valley. It was a huge success and sold out! Due to the overwhelming support, we are invigorated to continue seeking out ways to organize smaller, more intimate events. We are tentatively planning the wine dinner again for June 2014.

As we are preparing this invitation, Niklas is in his third week of the drug trial for Fragile X. This trial lasts for 12 weeks. As the X Ball nears, he will be finishing the trial and we will have more anecdotal information to share. We won’t know if the drug he is on is the actual drug or the placebo until after the study has completed. Currently this trial does not have an “extension phase.” This would allow Niklas to receive the actual drug after he has finished the trial, until it goes on the market. We are hopeful that the pharmaceutical company will reconsider this decision, but for now we are simply grateful for this opportunity to propel research forward for all individuals affected by Fragile X. You are cordially invited to attend the FALL X BALL Ethan Allen Hotel Danbury, Connecticut Friday, October 18, 2013 to benefit FRAXA Research Foundation Ron and Amy Watkins – Dinner Chairs

Honored Guests Actress & Writer • Elizabeth Clark From • Dan Grimaldi Research Update Dr. Alexander Kolevzon • Clinical Director, Seaver Autism Center Mount Sinai Medical Center

Cocktails – 6:30pm • Dinner – 8:00pm Music by The Michael Dell Orchestra Silent & Live Auctions Cocktail Attire

RSVP by September 26, 2013 Reply Card Enclosed I’ll be the judge!