This effort would never be possible without our many generous sponsors who helped to make this affordable to the myeloma patients. The entry fee was just $60 per participant, but my best guess of the cost without the help of our sponsors subsidizing this program to be more on the order of between $500 to $700 per participant. Thank you to our sponsors and our pharma partners who give back to the patient community. We have many new drugs approved or nearing approval for myeloma, so I can expect additional participation from the newer members of Myeloma Pharma. Our myeloma pharmaceutical partners have shown what world class patient centered advocacy programs can achieve. I have come to understand how important it is to have pharmaceutical companies who see us as partners and not merely profit!
Three years ago Pat Killingsworth started this as Pat’s Beach Party, and as he would always say “Feel Good and Keep Smiling,” and he wanted the event to be educational and fun. Even though this years program included a memorial to Pat on Saturday night, it was really a celebration of Pat’s life and his unwavering contribution and relentless dedication to the myeloma patient community. In addition to a program to help patients become their own best advocates and to educate themselves, Pat also wanted those that attended to hit the beach and enjoy what Fernadina Beach had to offer. It included a walk for Muscles For Myeloma and a silent auction which raised money for the Myeloma Crowd Research Initiative both of which Pat felt was the potential cure for myeloma. If you cure high risk myeloma, you will cure all myeloma. I share this wish. The Myeloma Crowd Research Initiative is a program to fund the two most likely clinical trials to cure myeloma. Nearly $200,000 has been raised to date, with a goal of $500,000 to totally fund this research. Also at the end of the program, the number one question was, “Will This Wonderful Survival School Be Available Next Year?” Pattie hopes to continue this Survival School as a legacy to Pat and an ongoing resource for the myeloma patient community. I will help to make this happen in any way I can. For those who attended, please use the comment section to let the program team know what your thoughts of the program were, and if it should live on for those who could benefit from this resource in the future. I am including some pictures of the event.
For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1