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Posted by Joel T Nowak (@joeltnowak) · Tue, Aug 5 at 3:50pm CST

Joel T Nowak - Patient/Caregiver Scholarship 2014

I am a super cancer survivor, a survivor of four different primary cancers including metastatic prostate cancer. When I learned I was metastatic I searched the metropolitan New York City area for an education and support program geared specifically for men with advanced prostate cancer. Shockingly, I was unable to find any program specific to men with advanced prostate cancer.

Increasingly I found that I became angry and frustrated. Four cancers and one that was terminal had finally become overwhelming. As I found that I became steeped in my anger I was challenged to stop crying and do something about it. I decided, very consciously that I no longer had any desire to live the rest of my life feeling this way. I decided to take up the challenge and do something about it.

Over the last seven years I have joined with a men’s international cancer organization (Malecare http://www.malecare.org) and been developing a program specific to men with advanced prostate cancer. My goals are to enhance men’s survival and quality of life through their education about their disease and how best to deal with the myriad of problems they face having this disease. I also have designed successful programs to enhance their psychological wellness.

The development of public policy issues surrounding cancer is also an issue I have tackled. I have had the opportunity to provide testimony to a Congressional Committee, at the FDA in support of drug development and at a CME hearing. I have also been working in my state (New York) in forcing the release for over 2 million dollars earmarked for prostate cancer research that has “fallen between the crack.”

Supporting cancer research is another of my goals. I am the co-fonder of the world’s first and only crowd sourcing web site to support cancer research (StartACure.com). I have served on a number of Department of Defense Research funding review committees and am now one of four consumers on their Integration Panel.

How do I carry out thee tasks, surprisingly much of my work is online and by the use of social media.

I have written a book “A Guide to Advanced Prostate Cancer” (http://malecare.org/advanced-prostate-cancer-program/) which is available as a free download (today it has been downloaded approximately 45,000 times). I have a series of Teleconferences available online (http://malecare.org/teleconferences/) featuring experts on issues around prostate cancer, I conduct an online support group which has attracted almost 1,000 individuals to participate and I write a blog (www.advancedprostatecancer.net) that both translates advanced prostate cancer research for the individual man and his family as well as dealing with public policy issues (in 2013 it had 6,250,784 hits by 888,885 unique visitors). I also have two twitter feeds, @advancedpca and @prostateca. Both of these feeds have had over 1,050 tweets and they both have over 1,200 followers.

I chose to retire to be able to give my full time attention to my cancer programs. I have a number of innovative program ideas that I will be launching in the next year and one half. However, being retired and solely oriented to my passion (my work) I do not have the extra resources that would allow be to attend this type of meeting. Given the nature of my work and its orientation towards social media, I believe that I am an excellent candidate for the scholarship. I have the underpinnings and following to have a very significant impact on many others. Now I need the education and advise to move to the next level.

Thank you for your consideration.

Questions about the contest or the voting process? Click here.

SM Scholarship 2014

 

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Cindy Chmielewski (@MyelomaTeacher) · Wed, Aug 6 at 10:30pm CST · #

I met Joel and his wife at the AACR Scientist-Survivor program. He is an inspiring advocate with a vision and purpose.