Thursday, December 4, 2014

Why Patients Need to Be Heard At Medical Congresses on not just CLL (chronic lymphocytic leukemia) but on All Important Medical Issues

I was asked by friends to help with a campaign to ensure that the voice of informed patients be heard more loudly, more clearly and more often at large medical congresses such as ASH and ASCO. To that end, I shot a series of very short videos, starting with this one that introduces who I am and how I got involved in traveling the world, teaching my fellow patients and physicians about my disease, CLL and how patients approach their medical decisions.

Me in front of bleach painting by my son, Will Koffman

This video effort is directed at doctors, and is an important but smaller piece of my larger work that focuses on providing us patients with the best possible resources to educate and support ourselves in dealing with our largely incurable cancer.

So here is my first "ask".

Please complete this survey to help me and a team of patients, nurses and doctors across the world to meet the unmet needs of the CLL community.  It will take you less than 5 minutes to do.

We plan to start by constructing the most patient friendly, robust and relevant CLL specific website. 

We don't plan to step on the toes of the other great websites out there and replicate what already exists, but to make something different, deeper, and more accessible and searchable. Please remember that our goal is to meet the unmet needs of our community.

Next, we are going to build a facilitated network of CLL specific support groups across the country, linked by the mother website and a common goal to make sure we are all getting the best possible care for our particular circumstances.

We can't do this alone and we already have a strong team of folks in place: doctors, nurses, researchers, advocates and patients, many of whom you already know and respect from the videos hosted on this blog and/or their ubiquity in the CLL forums and other helpful sites.

Truth is that the CLL world has changed radically in the last few years, and what needs to done has outgrown the capacity of this humble blog. It will slowly morph back to my telling my own story and sharing my opinions, but in order to teach and support my fellow CLL patients, a IRS approved nonprofit 501(c)3, The CLL Society Inc. (EIN # 46-4131354) will largely be doing the heavy lifting, starting with designing a web presence from the ground up.

Stay strong. We are all in this together.

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Anonymous Anonymous said...

My husband has CLL and is 2 years out from his first round of FCR, his numbers still look good but I just keep holding my breath. We are both relatively young (I am 35 and he is 49). Your blog gives me hope for our future. I know now what questions to ask when the time comes for him to need treatment again. Thank you for your tireless effort. I wish you all the best.

December 6, 2014 at 6:34 PM  
Anonymous Anonymous said...

What is your fundraising goal and how much have you raised?

December 11, 2014 at 5:06 PM  
Anonymous Anonymous said...

What is your fundraising goal?

December 11, 2014 at 5:07 PM  
Blogger Unknown said...

Thank you for share this informative post.

January 27, 2015 at 10:55 AM  

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