Forming a CLL support group in southeast florida

[LisaAlice]

Hi, everyone- it’s been a while. I wondered if anyone would be interested in forming a CLL support group one in which we could meet, share and help each other. This site (and others) has been enormously helpful but I am missing face to face contact desperately. I will be in Delray Beach, Florida in November and contingent on covid statistics, risk factors, etc. I anticipate organizing something either for the end of the year or beginning of next. Our safety comes first of course so for the moment I’m just throwing the idea out to test the waters, so to speak. Thanks in advance for your responses. XxLisa

[lankisterguy Volunteer]

Hi LisaAlice,-

You may want to check this out:

cllsociety.org/cll-specific...

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Florida, Fort Lauderdale

Florida, Orlando

Florida, Sarasota

Florida, Tampa

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If you want to start a new group you can go here

cllsociety.org/cll-specific...

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And let the CLL Society help you (they sponsor training and have some funding available for venue rentals etc.) most groups are virtual using ZOOM this year, but when in person meetings are practical, that is the preferred style.

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The CLL Society recognizes that not all patient needs can be addressed online so we felt it was critical to develop face-to-face Patient Support Groups focused specifically on chronic lymphocytic leukemia (CLL) led by volunteers in regions/cities where there is interest. Whether patients are newly-diagnosed or have lived with CLL for years, CLL Society will provide up-to-date information and support for all who attend meetings. The groups will provide mutual support, learning opportunities, patient-friendly, physician-reviewed monthly updates, as well as offering the opportunity to discuss anxieties and concerns with others.

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I've been facilitating one of the 4 groups around New York City for the last 3 years and can help with any questions.

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Len

[LisaAlice in reply to lankisterguy]

Thanks so much, that’s brilliant advice! The four locations you listed in Florida are quite far away from my city so if I could start a group closer to home, that would be preferable. Should I wait for interest here first before contacting the CLL society for help? Xx

[lankisterguy Volunteer in reply to LisaAlice]

No, I suggest you contact them as soon as convenient, they keep a list of people interested and try to match them up to help you recruit. -

Since the meetings are virtual now, you could join one of the Florida groups now before you get to Florida and see what it is like ( even in our NYC group- we have participants from London, Arizona and South Carolina on our Zoom calls). -

Len

[LisaAlice in reply to lankisterguy]

Thanks, Len, will do! Xx

[GMa27]

Hi ! We have an informal group that started in 2018. 5 of us became great pals & met every other month or 3 months for lunch. We live from Jupiter to Boynton to Fort Laud. We met mostly in West Palm/Palm Beach Gardens due to schedules. Then we zoomed a few times during covid. We had a date set to meet physically in June but had to cancel for conflicts. We text often & have kept in touch. You could join us but we never were interested in anything formal. Too complicated & too structured of a schedule. Keep in touch & hopefully when you get to Florida we are back meeting for lunch & safer. Love Delray- my parents used to live there. Stay safe!

Alice 💕

[LisaAlice in reply to GMa27]

Hi, thanks! That actually sounds perfect! I wasn’t aiming to organize anything formal but was looking forward exactly what your group offers-so I’ll be in touch at a later date. Tx xx

[craftmom]

Hi Lisa, You can also try the LLS . Seth Berkowitz would be very helpful for you. He is out of the Ft.Laud office.

Good luck.

[LisaAlice in reply to craftmom]

Tx, very helpful advice. Will do. Xx

[bayside64]

Seth started a new CLL support group a few months ago It is strictly on Zoom since we live in different areas in southeast FL. We have a wonderful CLL specialist who facilitates along with an oncology social worker.

[LisaAlice in reply to bayside64]

Tx sounds great!

[Kmegood]

It’s a good idea to have a support group . I am from Canada and will be in Deerfield from January till End March so if there is a support group happening then I would like to attend .

[LisaAlice in reply to Kmegood]

Great- I’ll keep you posted! Tx!

[ferne]

I’m from NY and plan to be in Deerfield for the winter. Thank you for organizing. Please keep us posted.