By Gary Petersen | Posted - Apr 4th, 2016

 

 

 

 

Pat's Myeloma Survival School - What An Amazing Weekend! Part of the Myeloma Miracle.

BY GARY PETERSEN What a marvelous program and outstanding success.  Where else will you find a patient-centered cancer program which brings together patients, caregivers, patient advocates, myeloma specialists and their support staff, myeloma researchers, nurses and nurse practitioners, nutritionists, pharma partners, genetic testing companies, authors,  long term survivors, The International Myeloma Foundation, Multiple Myeloma Research Foundation, Myeloma Crowd Research Initiative, et al.   Pat did this, and Pat's wife Pattie along with friends Michele, and Dave (with the help of so many others) made sure this idea did not die when Pat passed away so unexpectedly and suddenly just over a month ago.  Pattie was determined to institutionalize this outstanding program as a legacy for Pat, but most of all to continue the selfless efforts which Pat had always provided the myeloma patient community.  I think Pat was remarkable in bringing all of these resources into one place for the benefit of patients, however I also think it is an example of what I am coming to believe is the Myeloma Miracle.  What is the Myeloma Miracle?  I think it is the synergistic cooperative effort which exists between patients, advocates, doctors, researchers, IMF, MMRF, MCRI, and our pharmaceutical partners. You can see this all come together at Pat's Myeloma Survival School.  It is also the reason myeloma, a cancer which represents 1% of all cancers, can have over 33% of all cancer drugs approved in 2014 were for the treatment of myeloma. 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 Myeloma Beach Party. His motto was "Feel Good and Keep Smiling" and he wanted the event to be educational and fun.  Even though this year's 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 Fernandina 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 likely cure all myeloma.  I share this wish. The Myeloma Crowd Research Initiative is a program to fund the two most likely research projects 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. beach walk 2beach walk 3 beach walk 4beach walk 6 beach walk 7Dr.-Asher-chananKhan james bondjenny a pattie and kimpat and chanan pattie and pat sistersurvival school banner tenttrolley van ness 2van ness Pat would have been very happy to know Pattie did such a remarkable job with the help of Michele and Dave.  And as always, may God Bless your myeloma journey/ Gary Petersen editor@myeloma survival.com 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

 
Gary Petersen
About the Author

Gary Petersen - Gary is a myeloma survivor and patient advocate. His work centers around helping patients live longer by helping them to find facilities who are beating the average survival statistics. You can find Gary's site at www.myelomasurvival.com and follow him on Twitter at @grpetersen1

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