Greetings: Greetings this fine spring morning to... - CLL Support

CLL Support

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Greetings

BlueGillfisherman profile image

Greetings this fine spring morning to all my fellow sufferers of CLL , It has been a while since I posted anything other than a few replies. I know we have lost a few members but that is to be expected. "It is appointed unto man once to Die" I want to encourage each of you to live life to the fullest that you can.

But I also have a question that I hope one of you might be able to answer. I see that there are a lot of conferences on both coasts and also down toward Houston , but is anyone aware of one in the Kansas City area? I would love to meet some of you face to face as we go through this life with our monkey on our shoulders.

Have a great day all

james

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BlueGillfisherman profile image
BlueGillfisherman
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12 Replies
Shepherd777 profile image
Shepherd777

Fishermen are loved i.e. (James, John, Andrew, etc.)

lankisterguy profile image
lankisterguyVolunteer

I looked at the CLL Society but not anything near KC:

cllsociety.org/newly-formin...

Some of us are traveling to Niagara Falls next week for this one:

cllpag.ca/education-and-con...

but the registration is now full

The LLS has a chapter near KC- lls.org/mid-america

communityview.lls.org/artic...

LRF has a buddy program:

lymphoma.org/learn/supports...

I wish we could be of more help.

Len

BlueGillfisherman profile image
BlueGillfisherman in reply to lankisterguy

thanks for the help, have a great day and let us know how your trip goes

KL2018 profile image
KL2018

I would love a meet up! I’d even travel! How do I find any in the So California region? The idea of peace and serenity in death always has freaked me out. I prefer to envision a more lively version like Oingo Boingo’s “Dead Man’s Party” (it’s a song).

KL2018 profile image
KL2018 in reply to KL2018

Just found the link. I’m already connected with the amazing Irvine group!

lankisterguy profile image
lankisterguyVolunteer in reply to KL2018

The link to CLL Society

cllsociety.org/newly-formin...

will lead you to these two SoCal group notices:

cllsociety.org/event/city-h...

cllsociety.org/event/orange...

and if you are really far South:

cllsociety.org/event/ucsd-c...

Len

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply to KL2018

There are two in Southern California. One meets at UC Irvine, the other at City of Hope. LLS does a yearly Blood Conference - horrible name - which includes breakout sessions for the specific types, and LRF alternates theirs from coast to coast usually. Details are on th cllsociety.org site at the top of the home page. UCLA also does an occasional CLL specific meeting. I'm also in Southern California. PM me (chat) if you want more information. I don't include personal information in Unlocked posts.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply to MsLockYourPosts

Ah! Forgot the one at UCSD that is in the list above. Lankisterguy and I must have been typing at the same time.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

James - you might contact CLL Society to see whether there are plans for something in your area. I know I have seen posts from people - probably here or on cllforum.com from people in that general area. If there are a few of you who connect you could even set up your own meeting at one of the local restaurants, or whatever.

You might also ask your doctor how many CLL patients are seen in his clinic and those of others in the area. He/she couldn't give out patient information, but they might be willing to pass on a flyer for you asking people to contact you about starting something. CLL Society will help you get something going. Your local LLS might also sponsor something. It really does make a difference meeting fellow CLLers.

BlueGillfisherman profile image
BlueGillfisherman in reply to MsLockYourPosts

Thanks for the advice , my Doc has told me he is treating 50 people currently with CLL

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Maybe your doctor would do a talk on CLL - beginners to the latest at ASH. If you got 10 out of 50 you'd have the beginnings of a reasonably sized group, especially with partners included.

lankisterguy profile image
lankisterguyVolunteer

The CLL Society has a training program and advisers to help you organize a group.

cllsociety.org/newly-formin...

Len

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