A Rare Affair

The Summit Junior Fortnightly Club (SJFC) invites you to attend A Rare Affair on Saturday, November 15th at Twin Maples in Summit. Event proceeds will benefit the Soft Bones, Inc. Hypophosphatasia Foundation which was founded by a local, New Jersey Mom after her son contracted this rare bone disease. Join us for an elegant evening featuring: A Single Malt Whisky tasting, hosted by Joe Gratkowski, Master of Whisky Silent auction to include a round of golf at Baltusrol, jewelry, flowers of the month, tickets to sporting and other events, and more great items from Summit area merchants. Proceeds from the event will help fund a research grant and patient emergency fund. An annual research grant is awarded to a scientist whose project is deemed worthy by the Soft Bones scientific advisory board. The emergency fund was started to help treat preventable complications experienced by pediatric Soft Bones patients by providing transportation to Children’s Hospital of Philadelphia (CHOP). This past year, Soft Bones was contacted by a mom in Beirut who had a little girl in a clinical trial that developed pneumonia, but who unfortunately passed away. This could have been prevented. Soft Bones, Inc. Hypophosphatasia Foundation was organized in 2009 to provide information and to establish a forum to educate, empower and connect patients living with hypophosphatasia (HPP), their families and caregivers. Deborah Sittig founded Soft Bones after her son was diagnosed at just 18 months old. The Sittig family was concerned about the lack of information or anyone to turn to for support and started Soft Bones to connect with patients and medical experts from around the world. In addition to giving families and physicians important information about this rare bone disease, the Foundation’s goal is to raise funds to support essential research which will lead to a treatment or cure. With this funding, Soft Bones will be able to implement a grants program to inspire increased HPP research and be the catalyst for the cure. Since its inception, Soft Bones, Inc. is recognized as the main information provider to both patients and caregivers of HPP. Through the organization’s website (,www.brainpop.com/movies/hypophosphatasia) valuable resources for education and support can be found, as well as information on current enzyme replacement research and clinical trials. Please join us on November 15 to help make a difference!