We would like to begin by saying a few big “THANK YOU’S!!”
· To the Central Point Knights of Columbus who held the 2nd annual Hadley Hope Spaghetti Night and Bingo, which was a HUGE success with 275 people in attendance, and over $3000 raised for research!
· To the NUMEROUS volunteers that came out last weekend and helped with “Yard Sale for a Cure!”. Again, it was a great success, and we made over $2000! We especially would like to thank the Cutler’s for organizing, Bud Bebeau and Liberty Bank for sponsoring, and Danielle Wheeler for her countless hours.
· To the many, many people that have given us support and prayers in the last few weeks.
· To “Auntie Alli, who has agreed organize another fundraiser in Salem, which is coming up Saturday, June 5! It is a “Vegas in the Valley” night, which will include poker, BJ, roulette, craps, etc. for a chance to win great prizes! Plus, a silent auction. Here is the chance for everyone in Salem/Portland to come out and support NPC research. Please register early online, for event preparations. For details: https://www.hadleyhope.com/BuyProducts.asp?EventID=7 . Invite your friends and help spread the word!
Now, more good news: We received approval from a drug company called Novartis, to sponsor a small clinical trial with our 2 kids, and provide us with an experimental drug called Gleevec. Dr Ron Browne (funded by the four NPC family organizations (meaning YOU)), prepared the lengthy application and protocol successfully. This drug is used to cure a type of Leukemia, and has shown benefit in Niemann-Pick Type C mice. It has a safe profile in children, so we will try it for six months, closely monitored, and see if there is any benefit. By no means would it be a cure for NPC, but it could help delay onset of symptoms, and possibly increase weight gain. Let’s hope and pray it is successful!
Also exciting is that the sugar compound Cyclodextrin that has shown to move cholesterol from the cells, has just received Orphan Drug status from the FDA. This means that any trials or tests can be started quickly and easily, and also may be able to get government funding from the Office of Rare Diseases. Please see the link: http://blogs.wsj.com/health/2010/05/17/fda-grants-moms-wish-gives-orphan-drug-designation/We’re following up on this right now….
Blessings to all,
Bryan & Laura