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.
- 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.net
- 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.
- 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.
- 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.
- 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!
- 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.net 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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37 comments on "CLL Workshop"
I think it’s a great idea and I would certainly attend if I could. But I live 5 hours away.
I hope someone takes notes!
Margaret in eastern PA
Go for it! I’d be there if I didn’t live on the other coast, but I’m hoping that those who DO live there will take advantage of the opportunity! Thank you, Chaya, for all you do for us! Margaret Klubben
Can’t make it this time but will consider attending in the future. May be able to tie it together with a visit to #1 grandson since it’s a bit of a trek from Ohio.
This is a fabulous idea. I know there was a big conference in Ontario, but that was also too far away. I hope we can have one somewhere West, in the future — we are out here in British Columbia and could get to Oregon or Washington easily. I think this is very important, and hope that others will help to make it happen for the rest of us.
This is wonderful !! Wish I were going to be on that coast at that time. Is there anyone on the list experienced in creating a secure video stream so that those of us far away could attend, while preserving a log-in level of privacy?
I’ll be there with bells on.
Very kind and generous of you.
I won’t make it to Maryland, but maybe I may copy the idea for the west coast.
Very glad to have the opportunity, I plan to attend.
I think it’s a wonderful idea but we are in Florida. Maybe someday you will have a touring workshop! (A new venture!!!) I could try to get some local oncologists to attend as well. Ya never know!!!
I would definitely attend anything within a two hour drive. However, from NYC I will not make it. I think it is a fantastic idea and hope one closer to NY is one day on the agenda.
Kathym Great idea! I would attend but I live about 10 hours away in Ga.
hi Chaya
have you considered a companion audio conference call or even a future webcast ?
I am sure the technical issues can be overcome and the cost could be kept low.
Welcome to Maryland, Chaya. I’ll plan to attend.
Thank you for the article earlier this year on the Lenalidomide trial at Roswell Park, I am now a patient in that study, and would not have known of it had it not been for your efforts.
R
Wish I could be there…
I’d be very interested in being able to attend electronically, if the technology can be arranged.
Thank you, Chaya!
Margaret in the U.P. of Michigan
I would love to attend but not this time. Finished R/B but still getting eye injection for retina problem.
I could fly up and then visit my sister in NJ.
Rita
St. Louis
This is a great opportunity for anyone participating in the NCI/NIH Natural History Study…for those going to be there when Chaya is having her meeting, as the sites are “close” in my view. ( We had hoped to go to Diane’s meeting in MD when we were there in April.) We shall try to attend in Nov. (thinking ahead & hoping & assuming you will be having others, and IF our appointment somewhat matches your date).
Shirley & Pat, coming from Ohio & VT.
If only. Long way from London when you’re aerophobic! Love to see some notes of your meeting though. Thank you for all your efforts.
As well as quietly wearing the CLL badge, my work includes running “Informal Learning” events for adults.
Chaya – this initiative is a great way for people to learn more – as with others, I feel a little jealous! Would it be possible to have a webcam in the room, so that others in the CLL Topics community could eavesdrop? I’d be happy to put you in touch with our technical adviser (absolutely no charging implication) if this is of interest.
John – Cambridge UK.
This is EXCELLENT, and if I lived nearer I would certainly attend – however there is a rather large pond in the way! So I would echo what’s been said above – is there any way non-attendees can benefit, by notes or a summary or whatever? (unfortunately John’s webcam idea, while excellent, wont work for me).
Lawrence
Cornwall, UK
Wonderful idea – thank you.
I would echo what others suggested about making it possible to attend virtually, either through a recorded or live webcast and/or audio conference. (Maryland is too far to travel from Omaha.)
Lovely idea…..can’t attend but wish it were an online workshop. You are doing a wonderful service. Thanks
I live an hour away, am scheduled to work, would otherwise attend.
I would love to attend but I am too far away. 2 yrs. ago I did attend a 2 day symposium in Chicago given by Mayo’s and it was fabulous for me at the time. I would really like to attend via online somehow, and would at least love to see a tape of the workshop following the event.
I am a fan of yours and rely on the info. you present to us. I don”t know anyone else with the disease accept your fans on the website. Thanks for staying strong in your mission to help us be as educated as we can be.
Sarah
Great idea but I have one simple observation for anyone planning an educational event for CLL patients and caregivers.
The broad clinical, etc. diversity of CLL patients yields different needs for information. For example:
– Familiar vs. unfamiliar with CLL terminology and concepts
– Newly diagnosed vs. otherwise
– Stage 0 vs. stage 4
– A bucket vs. C bucket
– Smoldering vs. aggressive
– Interested vs. not interested in treatments.
Never the less, we have great strength and comfort from sharing information!
I live in Central PA, and I will plan to attend. However, I am just finishing my FR treatment with the final round 6 being administered during the week of June 7. Unfortunately, I acquired AIHA just this last week and it has left me very fatigued. I have begun Prednisone and am anticipating a change in my upcoming treatment. ( Yes to Retux, No to Fludara). This will all be discussed with my local ONC who I will meet on June 3 and with Dr. John Byrd, of Ohio State who is my “team leader”. Once all of this is figured out and I know what I can and cannot do, I will make my final decision on attending. I met you, Chaya, in Niagara Falls in April 2009. I do hope I can attend.
I can echo the above caveat from Smoldering since I often feel awkward clinging to every bit of information here, trying to personally process it, when nothing is happening to me…..yet. I also find it difficult to balance the difference in even the basics (staging/prognostics) between cancer centers/experts.
I realize that this is a reflection of the limited but expanding state of knowledge about CLL which is why Chaya’s workshop could be so helpful. It would still be like herding cats and depend on what the cats were wanting to do. Lest this sound negative, I would be there if I were even on the same coast but, this time, I would welcome the opportunity to eavesdrop electronically if agreeable to those making the effort to participate.
Once again, a heartfelt note of appreciation to Chaya for offering to undertake such a complex task for all of us.
Agreed, a video conference would be great. It’s to far to drive from Florida.
Chaya, I wish you all the best, would love to come, but too far away for the time being, if in the future I plan a visit to the USA I will time it to one of your workshops.
We have found the Patient Meetings here in the UK very beneficial, our next one is in Newcastle June 10th.
Best wishes
Chonette
Chaya, I thank you for doing this and will be there unless my husband’s condition worsens quickly. (I’m the one with CLL not him it’s a long story)
I can’t tell you how excited I am to meet you and other CLL warriors, survivors. I live about two hours away and despise that beltway, but will do it anyway. THis is so important Marilyn
I also live in eastern PA, and it is too far for a day trip. See how the first one goes and consider another location in NJ, to catch NYC and Philadelphia.
I would love to come, but will not be in the area at that date – perhaps I can make the next meeting. I live in VA, a good hike, but one I’m very willing to make when I’m here. And I too would like to read notes, or see video, or whatever way you can discover to distribute the information attendees get that day.
Thanks so much for all you do for us, Chaya, And welcome to the east coast!
Cathy
I’d like to come too but Maryland is a tad too far. NJ or better yet NYC, because it’s a great hub for all those further afield, would be a great 2nd workshop destination.
Thanks,
Jenny
Many thanks for this opportunity. I will be there and I would gladly pay a subscription to support a monthly webcam broadcast.
I am new to CLL (diagnosed Aril 2010). I am very grateful to Chaya and her daughter for continuing their efforts to support the CLL community without the presence of their wonderful husband and Dad, P.C.
David Arenson’s blog directed me to this amazing resource.
Thanks to everyone who cares enough to comment and to reach out to the novices.
We live in the Pacific NW. If we were closer we’d definitely attend. Hope you have a great workshop. Will you be able to share with those of us who are distant?
Linda
I would attend if I could but unfortunately I cannot. Hopefully, I will be available for the next one.
Bob
We are looking forward to being at the workshop. Thank you Chaya for this wonderful and generous opportunity to be able to listen, learn and share with others on alien Planet CLL — and to meet you :-)
Anna
Thank you Chaya for everything you do on behalf of the CLL family. I am making every effort to attend (Kansas is a long way from MD). I believe workshops are a wonderful idea–an opportunity to learn and share is always beneficial. I look forward to meeting you.
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