Start Up Support Groups - CLL Society - CLL Support

CLL Support

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Start Up Support Groups - CLL Society

Anastasia1
Anastasia1

CLL Society has just sent their CLL Alert/Newsletter where they are looking for interest in starting monthly support groups. They say...

“If you are looking to join a CLL Society support group near Seattle, WA and all points north, St. Louis, MO, Oberlin, OH, Kansas City, Buffalo, NY, or Toronto, Canada, please visit our surveys below to get one going”

Go to:

CLLSociety.com

Click on the 2nd box “CLL-Specific Patient Support Groups”

Find your city and take the survey.

I am very fortunate that I can attend one in Orange, California where Dr Koffman from CLL Society regularly attends. I look forward every month and try not to miss it. I feel great every time I leave and I feel smarter each time :)

He says “ Smart Patients Get Smart Care”, I love that.

Anastasia

9 Replies
oldestnewest

I filled out form over a week ago expressing interest in a St Louis MO group. Hope to get some sort of feedback.

lankisterguy
lankisterguyVolunteer in reply to StayConnected

Hi StayConnected,

I understand your concern about a lack of feedback- but please remember that nearly all of the work on the city specific support groups is done by volunteers.

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The CLL Society tries to gather enough names and info from potential members before launching a new group to make it sustainable and then get the new facilitators to a training class in California, so that process can take some time.

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If you want a quicker update, you can try contacting Terry Evans through: cllsociety.org/contact-us/

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Len

Thanks for the feedback. I’m prepared to be patient...and grateful for efforts on our behalf. Lots of good info online in the meantime.

Stay Connected. There is already a link on the CLLSociety webpage for people that may be interested in a St Louis CLL Support group. Here is the link. st-louis-cll.questionpro.com/ Usually we put the survey up for 2 months to see how much interest there is in forming a new group in a city. I believe it has been up about a month now. So, be patient and once we determine how many people might be interested, we can go from there. We have started groups with as few as 5 people, so it doesn't take a lot of people, but it would take someone to facilitate the group. If you fill out the survey, we will contact you after the results are in.

Terry Evans

Director, CLL Society Support Network

Thanks Terry. I already filled out a form through a link sent to me via email but I’ll check the website.

I just filled out the survey for an StL group as well. Looking forward to hearing back.

Great. I haven’t received any feedback regarding the survey. Please let me know if you do. If you don’t mind my asking, do you know your markers? I’m unmutated with 11q and 13q deletions, about 2.5 years into w&w.

I’m newly diagnosed. All I know so far is that I have a 13q14 deletion. Will know/understand more when I go to the follow up hem/onc appt.

That’s good. 13q seems to predict the best outcome, compared to other markers. Best wishes on your CLL journey.

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