Now that I am in the thick of East Coast population centers, I thought it might be useful to sponsor periodic CLL workshops where patients can get together for mutual benefit. I owe personal thanks to Diane MacKinnon for her help in brainstorming this new initiative and her generous support. I hope to sweet-talk Diane into taking an active role in this and future workshops.

The first Workshop is tentatively scheduled for Satuday, 19th of June, 1:00pm. I expect the meeting will last for 2-3 hours. Go get yourself a nice lunch, then attend the workshop and get done in time to head home for dinner – that is the general idea. Since it is a saturday afternoon, traffic should be light.

Why is this a “tentative” schedule you might ask. Well, it depends on your response of course. There is no point throwing a party if no one wants to attend! Depending on how useful this first workshop turns out to be (judged by your feedback), we might have more of them in future. It all depends on you. Here are the details.

  1. You must register if you wish to attend and you must do so no later than June 5. Cut and paste the Registration Form below, fill in the required information and email it to our webmaster at workshop@clltopics.org
  2. Only registered members of the “Updates” patient community may attend. This way we hope to keep this a serious workshop for patients and their caregivers. I don’t want to waste my time or yours.  Please read the “About Us” and our “Mission” sections if you are not sure of our agenda. The same ground rules we use for Updates will be used for the workshops as well.
  3. Registration is free of charge. Besides a significant amount of my time there are obvious dollar costs involved. As always we welcome your generous donations. Everything we do on CLL Topics and Updates depends on the grassroots support we have in the patient community. The day we lose that support is the day we cease to exist – rightly so.
  4. For this first workshop we plan on an opening presentation from me followed by a general question and answer session. Down the road we may get more ambitious and have local CLL experts give presentations and field questions.
  5. If we have less than 20 people who want to attend, I am willing to host the workshop at my home. If the number is greater than that we will rent an appropriate meeting room locally in Columbia MD (or nearby). After June 5 when all the registration requests are in we will decide on the venue. We will send all registrants an email with the location, map and driving directions no later than June 10. Be sure the email address you give us in the registration form works and our response back to you does not go into the spam folder!
  6. As always, all of your personal information – including your registration information – is held strictly confidential and will not be shared with anyone other than us at CLL Topics / Updates. At the workshop you can share as much or as little of your personal situation as you wish. You will not be asked to wear name tags.

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Registration for CLL Workshop

Saturday, June 19, 2010

 

Your REAL name (no psuedonyms please):

Your CLL Topics Updates User Name:

How many people in your party?

Please list the names of all the people in your party.

 

Current email address where we may reach you:

Send this workshop registration request to workshop@clltopics.org  no later than June 5, 2010. You will get an email from us with the venue and driving directions – no later than June 10.

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That is about the size of it folks.  What say you?  Is this a good idea? Is it going to be helpful to patients? Would you attend if you could? How often should we schedule these workshops? Don’t be shy, speak up!

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