Author Topic: Support Groups  (Read 2802 times)

GwenB

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Support Groups
« on: June 15, 2009, 07:23:57 am »
Good morning everyone!

I'm new to the forum and was wondering if anyone has idea's or suggestions on forming a AN support group.  I've just started my research and need some help from those that have experience.

I'm 5 months post surgery and the closest support group to me is in Atlanta.  I'm in East Alabama and very interested in starting a group.

Thanks for any input you can provide!

Gwen
God grant me the Serenity to accept the things I cannot change; Courage to change the things I can; and Wisdom to know the difference.

Kaybo

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Re: Support Groups
« Reply #1 on: June 15, 2009, 07:37:57 am »
Gwen~
I gave you a shout out on the other thread (& boy am I glad you signed your name b/c your screen name was awfully long!  ;)) but wanted to welcome you here also.  I don't know much about support groups as we don't have one where I live either!  I just try to get together with people from here when I am in their area.  Of course, I went for 12 years without ANY support or even this Forum so it is a little different for me!  ;D
WELCOME!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Vivian B.

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Re: Support Groups
« Reply #2 on: June 15, 2009, 07:41:06 am »
Hi Gwen,

Welcome to the forum. Hope you are doing well. I can't offer any answers as I am from Canada. I myself have searched support groups in my area and none are available. I even asked the surgeon's secretary and she was unaware of any support groups.

Vivia
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

cindyj

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Re: Support Groups
« Reply #3 on: June 15, 2009, 08:03:42 am »
Hi, Gwen, and welcome!  Now, we'd sure love to have you come over to Atlanta for our support group!  But, can't blame you for not wanting to make that drive over here...so, contact Melanie Hutchins at the ANA office.  You can get her phone number from the main page here.  She coordinates all the Support Groups.  Our Atlanta group is just getting started and she was so helpful to me.  They take care of mailouts for you, you just have to find a place to have it and give her the date.  She will have a list of ANA members in your area.  You can also reach out to folks here on the forum once you have a meeting setup.  But, I would definitely contact Melanie first. 

Where are you in Alabama?  My husband's family is from east Alabama originally...

Please feel free to PM me with any questions you may have.  I'll be glad to help, though I am very, very new to the Support Group leader thing!

Cindy

rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

ppearl214

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Re: Support Groups
« Reply #4 on: June 15, 2009, 08:04:14 am »
Hi Gwen and welcome!  I'm not sure how far you are from Birmingham, but my suggestion is to phone the ANA office (outside Atlanta)...


ANA National Office Toll free number:
1-877-200-8211


Ask the girls in the office if there is a support group in the Birmingham (or if you are close to Columbus, GA... maybe that area?)...


But, we are also here as an "online" support group (although, I also believe that "face to face" meets are great as well!)... so, we are here to help.

Again, welcome!
Phyl
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Jim Scott

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Re: Support Groups
« Reply #5 on: June 15, 2009, 03:30:46 pm »
Hi, Gwen ~

Phyl and Cindy have already offered you the relevant information regarding setting up a local AN support group so I'll just add my 'personal' welcome and hope that you'll be a frequent contributor to these forums that constitute our online AN support group.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

CHD63

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Re: Support Groups
« Reply #6 on: June 15, 2009, 03:36:02 pm »
Gwen .....

Glad to have your name now ..... and another welcome here!

Regarding support groups ..... I have none in my area either as such, but it is amazing how friends and acquaintances have said to me "Oh, did you know _________ had an AN?"  I have had many phone conversations with these referrals and this Forum has been great (although I did not become active on it until long after my surgery).

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

JohnnyDiaz

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Re: Support Groups
« Reply #7 on: June 16, 2009, 05:51:31 am »
I think it is a great idea and let me tell you for me finding a local group was a blessing. I learned so much from the group and made new friends that checked on me during my surgery. My understanding is that a couple of ladies that attended the same church started meeting in the library and slowly word got out and now people from most of North Florida drive some time to attend. They have guest speakers and schedule it once every three months. We usually start off by introducing ourselves and telling a few seconds on where we are at in this journey. I think contacting the ANA site is the way to go and by the way fresh donuts make every meeting happy.  :)
Diagnosed 6/08 - 2.5 cm Left AN
9.5hr surgery 10/7/08 w/Dr. Chandler and Dr. Green Baptist Hospital - Jax, Fl
Post Op Complications - Additional Surgeries 10/12 & 10/13
SSD on Left
7 months later I feel great!!!

leapyrtwins

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Re: Support Groups
« Reply #8 on: June 16, 2009, 05:54:52 am »
Gwen -

as others have said, contact the ANA.  They can help you with setting up a support group.

Welcome to the forum,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Migoi

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Re: Support Groups
« Reply #9 on: June 16, 2009, 06:14:32 am »
Hi Gwen,

   I am in the process of starting up a support group in Arkansas. As others have said...contact Melanie at the ANA office, either through email on on the phone. She is wonderful and will provide a lot of support in helping you get started.

   My experience has been that it's a somewhat slow process.

  ..take care.. tim b
Arkansas Support Group Leader
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