Date: Friday December 20, 2013
Where: Elk’s Club, East Broad Street, Hazleton, PA
Time: 500PM – 9:00PM
Donation: $20/person includes Buffet, Admission, Silent & Live Auction, Tricky Trays, 50/50
Celebrity Guests: Russ Canzler, NY Yankee Signee & Hazleton Native; Eric Shrive, PSU Football Grad & Scranton Native
100% of money will fund dystonia research; www.dystonia-foundation.org Tax ID #95-3378526
As we prepare for the 10th Annual on the eve of the eve of the event – I must reflect on how we got here and what’s happened over the past year. To start, the event has an amazing committee of volunteers who help with organization, food, ideas, gifts, donations and spreading the word which is Priceless to say the least – Brian & Michele Patrick, Samantha Marchetti-Neaman, Kim Chipeleskis-Platek, Tricia Chipeleski-Marnell, Tara Marnell, Maria & Steve Fiore, Ann Confliti, Cindy Treon, Lori Kmiecinski, Cathy Brogan, Pete Ciavarella, Heath and Rebecca Pursell, Brian Billig, Helen Capparell, Gary Smith (Emcee & Auctioneer), Dave Seamon (Standard Speaker), parents, friends and the Hazleton Community are Hugely Responsible for our continued success. Some current and past donors: Dennis Karmonick, Keith Segedy (Stripes&Strikes), Doc Palermo(Past Emcee & Auctioneer), Cynthia Kirchner (Model/Actress/Co-Host for many years/ Hazleton Native) Shenanigans, Cuz-N-Joes, Damon’s, Fred Barletta (Past Emcee), WYLN and SSPTV, and so many others who help.
The planning for the event starts the day after the previous event and continues throughout the year with solidifying the date a year in advance, writing letters/emails/phone calls for auction items, monthly meetings to keep everyone on track and organizing all the donated food, set-up, clean-up, volunteers for the event day.
Who would’ve thought ten years ago in a small dive bar packed to the rafters with once famous Freddie Mitchell (Eagles Wide Receiver) and asst. trainer Eric Sugarman (Now head Trainer Minn. Vikings) we’ve raised over $165,000.00 which goes to the Dystonia Medical Research Foundation to aid in finding a cure for this debilitating movement disorder.
Debbie Durrer, Director of Development Dystonia Medical Research Foundation, Chicago, Illinois will be in attendance along with many out of town dystonia support group members and doctors who deal with dystonia on a daily basis.
Why have the Event?
After suffering a hit n run accident while training for a triathlon with visions of becoming a Division I head basketball coach, my life entered a challenging phase. The brain trauma from the accident caused me to develop weird symptoms which lead to my diagnosis of dystonia. Not knowing what dystonia was, dealing with this life altering movement disorder of which there is no cure, I turned to the Dystonia Medical Research Foundation(DMRF) for guidance and support. They saved my life, gave me purpose, and reasons to live by helping me focus on raising awareness, exposing me to the many people and children who suffer from dystonia and many undiagnosed or misdiagnosed to help in their quest to Find A Cure. After attending the Children’s Symposium for dystonia in Chicago in 2004 and meeting these amazing kids, Cathy and I decided to do something to help the children and raise awareness & money to aid in research and give back for all the help & support the DMRF gave to me. So 10 years later, here we are and still fighting to Help Find A Cure.
In preparation for the event, I am thankful, grateful and lucky to have been blessed with dystonia – Yes, I said blessed with dystonia, because it has opened new doors, opportunities, friendships and provided new goals to strive for and new adventures that I would never have had the fortune of experiencing. As I prepare for the 10th annual benefit, I also prepare for my 10th battery change. I am a battery powered person, Hence the blog – “Battery Powered Person”, as a byproduct of DBS Deep Brain Stimulation. My 10th battery change is 3 weeks away – Simple Procedure – Open up the chest, take the old batteries out and put the new ones in. It’s all done in a few hours and back to life, recharged and good to go unbeknownst to Most! Miraculous to say the least, these batteries have allowed me to complete 5 triathlons, 1 biathlon and resume my coaching career at Crestwood High School, where I’m currently the Head Girl’s Coach. The batteries (Neurostimulators) are not a cure but certainly through programming and trial n error have given the quality of life back and I am forever grateful. Mostly, dystonia has taught me to focus on what I can do, not on what I cannot but with that being said, if I want to accomplish something, dystonia will not stop me because I will figure out a way! (Not to bore – read my previous blogs)
Bring friends, neighbors, a pleasant disposition and a big appetite – Guaranteed, you will have a good time and you may even bump into a few battery powered people!