June 19th CLL Workshop Details
For 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.
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19 comments on "Site News: June 19th Workshop – Columbia, Maryland"
Chaya,
Wish you all the best; with your skill I am sure you make lives easier for quite a few people. I most certainly apreciate your down-to-earth comments and “readings”, tea-leaves and other.
Stay well,
Mette
You quite properly remind us of the cost involved in all you do for us.
I, for one, would gladly contribute ‘up front’ if that would permit hiring some type of professional transcription of the workshop to produce audio or print records. Such a record could then remain available for purchase by subscribers to CLL Topics.
Is this approach feasible?
WE, too, in faraway NZ, would contribute something “upfront” for professional transcription for audio or print records as qb recommends above…
Aaron
qb:
Maybe for the next time around – I think there is not enough time left between now and June 19th to make the arrangements. Thanks, I will keep your generous offer in mind.
What I would like to do – if we do end up video-taping stuff – is put it up on YouTube or something like that, so anyone who wants to see it can click and see it. I am not big on selling stuff.
But all this depends on how interesting the workshops are. And that in turn depends on how willing the members are to participate actively. Not worth the effort if no one speaks up and it ends up being another boring meeting.
Well, I for one can’t see it being boring in any way. To meet other Cll patients that research things will be an amazing help. To meet you Chaya would be worth the drive, and I think from what I’ve read already that you are simply brilliant and a CLL angel for all of us.
Hi Chaya,
Many thanks for the efforts on your part. I will be driving down from Philadelphia. Please let me know if I can add to a treat table to ward off hypoglycemia. Has there ever been a meeting which did not thrive on cheese snacks and brownies? I’m happy to provide either one and or a fee to help cater the hours.
Really looking forward to meeting you.
Thank you.
Diana
Can’t make it this time, but in the future driving down to Maryland from the New York Metro area is not a great hardship. I’m retired, so the timing is not a big deal either.
It is wonderful that you can find the time and energy to hold these conferences…you are a blessing to us all Chaya.
Fred
I have some podcasting gear I’ll bring so we can record audio and produce a downloadable mp3 of the workshop (a Zoom H2 that did well in some panels at Balticon). We should discuss it with all the participants when they arrive, in case some need the recording edited for privacy to allow them to participate fully. I also have some semi-pro gear, but it’s not set up for my new laptop, maybe next time for that. I don’t have a PA system, so if the conference room doesn’t have one we’ll just need to talk LOUD.
Rich
rroys:
Very generous of you – but I have to sort out confidentiality issues with the guests before we can embark on any sort of recording. So, for this first one, I have to take a rain check on your kind offer. Let us see how it shakes out, I promise to get back to you before we schedule the next workshop and see how best to organize it.
Diana, thanks for your offer as well. I have just sent you a personal email on the subject.
Thanks everyone. You guys make me proud!
Hi Chaya,
I trust you are happy in your new home. I am so sorry that I cannot make the meeting on the 19th and am very hopeful that you’ll hold another. I do understand people’s desire to have a video or mp3 recording but have to say that I think these need to be private sessions in order to allow people to feel free to be open about their situation. Many of us fear job discrimination and although it is illegal, that does not erase subtle forms of discrimination.
Wow, this meeting has lifted my spirits so high, I can hardly wait to make the trip down and meet you Chaya, how lucky we are to have you as our advocate and champion.
We have a four-hour drive from NJ, so we are leaving early in the a.m., but I’d very much like to bring some healthy goodies for lunch (not at peril to weather conditions) once there is more of a final head count. I’d also like to contribute toward the cost to rent a facility now that we are too large a group for your home.
Re recordings, youtube, etc., I would be very uncomfortable being taped and losing my privacy outside of our CLL group — I have not disclosed CLL to anyone other than my immediate family and most intimate friends. It’s definitely something we should discuss at this first meeting.
COnfidentiality issues
I had a feeling there would be problems with recordings of any kind. Please be assured we will NOT RECORD in any fashion without the explicit permission of everyone. And NO RECORDING at this first workshop since we have to sort out all this stuff ahead of time. My personal preference would be no recordings in future as well. Patient confidentiality is an extremely important thing and I cannot control access once stuff is up on the internet.
How is this for a compromise:
1. I will publish a copy of my presentation, slides and text, soon after the workshop is over.
2. People who participated can chime in with their comments, recap of what they said, what they understood of the discussion, whatever they want to share with the larger community – at their discretion.
3. People who want to participate in future workshops can comment on what they liked in the old one, what they would like to see done differently, suggestions for new areas to discuss at future workshops.
I wish I could attend your session but live in Winnipeg Manitoba and with a 3 year old, cannot make the necessary arrangements quick enough to make it happen!
I appreciate that you will be publishing your presentation…great compromise!
I also look forward to one day meeting you, some how, some way, it will happen!!
Thanks Chaya for all the good you do for all of us!!
Warm Regards,
Tess
Winnipeg
Chaya any comments:
What a pitty state of affairs for cll pateints if you compare like for CML patients great strides in research going on new potent drugs like gleevec, tasigna, Sprycel and Biosante GVAX CML vaccine being developed drugs made for cure on the other hand for cll’rs research are done in green tea, advising cllr’s to take green tea, or failed drugs for other conditions are being tested in cll why this discrimination although cll is the most common leukemia why pharmaceutical company’s not targeting the most common leukemia.
Hi Chaya,
Confidentiality Issue:
I am very grateful for the compromise you suggested.
Thank you for offering to publish your notes, slides and presentation.
As always, I appreciate your generosity.
Many thanks,
Diana
Hi All,
I’ve sent out location information and directions to all the folks who signed up for the Workshop. If you signed up but did not get the directions, please do the following:
1) check your spam or junk folder, and if it’s not there,
2) contact us!
Thanks, and we look forward to meeting many of you on the 19th!
Radha
I regret that I cannot make it. As Kathym, I am in GA and too far to drive. Chaya, your sharing suggestion is great. Like this open forum, if participants want to post their comments and questions, it would be very helpful for we non-attendees.
My wishes for a great meeting and good health to all.
Is anyone staying in the recommended closest motel/hotel? I am seriously considering spending the night just to be around any or all staying over. I was thinking of the extra bonding, conversation, and insights that can be gained. If I learned anything from my
14 years as a breast cancer survivor it is that these types of groups
are not only life saving with information, but also very positive for coping emotionally and spiritually with all we have to deal with.
Bo,
Attending on the 19th was both a honor and pleasure to meet Chaya and everyone else. I found the first workshop to be full of practical and easy to understand information. The atmosphere was relaxed and the presentation was simplified further by Chaya’s amazing ability to cut straight to the facts. Being in the company of others with varying experiences was to me a bounty of valuable information and to be able to share that was fantastic.
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