June 19th CLL Workshop Details

heres-the-rhkFor all those people who registered to attend our first CLL workshop, thank you.  You will be getting an email in the next day or so with the details about the venue, how to get there etc. Please keep an eye out for it.  If you have registered but do not hear from us, please do contact us!  Emails often get lost, filed as spam etc.

As of today, we have roughly 40 people planning to attend.  I was not sure how many to expect.  But clearly this number is more than I can host in my modest townhouse and so we have made arrangements to rent a conference room at a local facility.   I hope you guys will be coming loaded for bear and all of you will participate actively in the discussions.  This is our first worshop and since I am not sure what you will find most useful, it is going to be a pretty open-ended agenda. We might get more focused in any future workshops.

I realize many more of you would have attended if you could.  Unavoidable time conflicts are to be expected, as well as people living too far away to make the drive to Maryland.  Many of you suggested on-line access or video taping the workshop.  Good ideas, and I did consider them.  However, I truly feel these workshops are likely to be most useful to patients (and their caregivers) who actually participate in the wide-ranging, informal and hopefully informative discussions.  Cost is another consideration, as well as available time and technical resources of our very small working team – most of who have demanding day jobs. We run CLL Topics and Updates on a shoestring with as few bells and whistles as we can manage.  If  I can sweet-talk one of the attendees into doing it, we will publish workshop meeting notes later on this site.

Some of you asked if similar workshops are going to be held in other parts of the country.  The honest answer is no.  I am not planning on organizing any such workshops outside of my new home turf and comfort zone of Maryland.  I have neither the time, organizing ability or financial resources necessary to hold workshops elsewhere in the country.  The Canadian CLL patient Conference in Ontario in April 2009 was a truly extraordinary affair, but it took a lot of planning and hard work on part of the organizers.  I cannot even begin to guess how much it cost!  All I and the rest of the speakers had to do was show up, since the cost of our travel and hotel stay were reimbursed by the organization.  If some of you have large, active CLL patient groups that are sufficiently interested in meeting me and can mobilize yourselves to organize workshops in your neck of the woods, do invite me.  Time permitting, I would be happy to visit with you.  Your dime.

One-on-one “Consultations”

Over the years, I have met some of you face to face in Sedona, Arizona and elsewhere.  I hope to continue having these one-on-one meetings with more of our registered members. Please contact me  and make an appointment well ahead of time!  It also helps if  you send me your CLL records ahead of time, so that I have had a chance to look them over.  What little I know about CLL I am more than happy to share with you.  But you must be very clear about the ground rules: these “consultations” with me are no substitute for expert medical guidance.  As always, a good mantra to remember is “Buyer Beware”.  I cannot guarantee I have all the answers or even most of the answers.  I most certainly cannot guarantee wisdom or medical guidance.  But I can and do guarantee complete confidentiality. I think I have become pretty good at reading lab test reports and prognostic tea leaves,  and I see myself as a passionate advocate rooting for you and just you.  Life with CLL can be a bit of a challenge and you may feel out of your weight class dealing with more entrenched interests.  I have no agenda other than trying to tilt the balance more in favor of patients.

But in the final analysis, you are the best judge of the value of what we try to do at CLL Topics  and Updates.  The only reason for our continued existence is the grassroots support we have in the patient community. As savvy consumers, it is your right to ‘vote with your feet’.  And your hard earned dollars, when you send us a donation.