I’m Thinking of Starting a Support Group

Jill Price avatar

by Jill Price |

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A crazy idea came to me early one morning when I couldn’t sleep: Find or start a support group for women with disabilities. While there are many online communities, there are few in-person support groups for women with disabilities.

I have Charcot-Marie-Tooth disease (CMT) type 1A, and though it is the most common inherited disease affecting the peripheral nervous system, I know of only a few people who suffer from it. I belong to some online communities and Facebook groups, which are a great way to get support and advice from others, but I feel that something is missing from these groups.

One missing aspect with these online groups is personal interaction; the connection you get when you meet and talk with someone face to face. That thought is what led to my 3 a.m. aha! moment of starting a support group for women with disabilities. As moms, daughters, sisters, friends, and co-workers, we face challenges every day. It would be nice to have a “tribe” that understands how difficult this life can be. I have great friends who do try to understand and are very supportive, and I love them for it, but they do not live with a chronic illness or disability, so they do not truly get it.

While many real-world support groups exist for caregivers and parents, including meetups, none of these are specifically geared toward women. Or at least that’s the case in my area. Surely, I’m not the only one who finds something missing from online communities.

So, how do I start a support group? What do I envision for the group? How would I manage to run a community alongside my family and work responsibilities? I’m still pondering these questions. I am not sure where to begin. Do I contact a social worker at a local hospital or get in touch with the Muscular Dystrophy Association’s advocacy program? Where would we meet? Perhaps at a local coffee shop, library, or park. What would the focus be? I would like to have guest speakers discuss topics such as motivation strategies, health concerns, and how to deal with everyday challenges.

I would love to create a community of women who help to build each other up.

Do you have any ideas about how I could make this happen? Please comment below.

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Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.

Comments

George H. Simpson avatar

George H. Simpson

Ping me and we can discuss if this will work as a part of CMTRF.org.

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Jill Price avatar

Jill Price

Sure- I would love to chat with you.

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Michelle avatar

Michelle

Were you ever able to starta support group? If so, would live some information on how you first started.

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Laurel Richardson avatar

Laurel Richardson

Hi Jill!
I would love to chat with you about this amazing idea. I am the Director of Community Outreach for the CMTA and would be so happy to brainstorm with you. I also have CMT 1A. My email is [email protected], please send me an email if you want to chat.

Thank you!
Laurel

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Jill Price avatar

Jill Price

Hi Laurel,
I would love to connect with you. Thank you!!

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Vicki Pollyea avatar

Vicki Pollyea

Please contact the CMTA -Laurel Richardson is the facilitator for CMT groups. Currently, there are 70+ across the US. To see were the existing groups are located, check out this map https://www.cmtausa.org/resource-directory/wpbdp_category/cmta-branches/#main Working with the CMTA and leading a group for the past 15+ years has been very rewarding for me.

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Jill Price avatar

Jill Price

Thanks!!

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Vicki Pollyea avatar

Vicki Pollyea

Please contact the CMTA -Laurel Richardson is the facilitator for CMT groups. Currently, there are 70+ across the US. To see were the existing groups are located, check out this map https://www.cmtausa.org/resource-directory/wpbdp_category/cmta-branches/#main Working with the CMTA and leading a group for the past 15+ years has been very rewarding.

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Jill Price avatar

Jill Price

Thank you, I will check it out!

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Sue Green avatar

Sue Green

I would like an in person support group and I live in Savannah, GA. The closest to me is 2 hours away (Jacksonville, FL) I would love one for women. I've thought about starting it too, but not sure how to find out who to invite! I thought of giving a notice to my Neurologist to but not sure if they would really want to be involved. Can the CMT organization notify people in my area? Thanks Sue

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Jill Price avatar

Jill Price

I would check the CMTA website, they list all the local branches. Hope you find one near you.

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Govind Gupta avatar

Govind Gupta

Hi Jill,

i would really appreciate your thought, but would like to draw you attention towards other similar rare neurological disorders like hereditary sensory autonomic neuropathy where patient group is even small but the symptoms are similar. if there a group which will be for all similar patient group it would be great.

i would like to connect with you. My email address is [email protected]

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Jill Price avatar

Jill Price

Thanks for reaching out.

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Govind Gupta avatar

Govind Gupta

may i know your email address,in order to work over the support group.

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Jill Price avatar

Jill Price

I have not started one, still thinking it over.

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Michelle Duran avatar

Michelle Duran

Jill, Please let me know how you get one started if you do. I too am interested in creating a support group for parents/ caregivers of kids with CMT and my teen daughter wants to start one for kids and teens with CMT. Closest group to us is 2 hrs away. I would appreciate any ideas of to start this ball rolling.
Thank you.

Jim Harpel avatar

Jim Harpel

Hi Jill- I am Jim & I have CMT. I have AFO braces & they are very annoying but they do help my left ankle alot- My tendon is completely dead & my ankle rolls out of control. My mom has drop foot really bad. I have led a fairly good life until 3 years ago I had a toe amputated because I stepped on glass & got infected- Am now 52 & notice it affecting me alot worse.

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Jill Price avatar

Jill Price

Hi Jim,
Thanks for reaching out. I too notice that my CMT is getting worse as I get older.

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Dominic avatar

Dominic

Jill,

My girl has CMT which has become aggressive over just the last year. She is having trouble coping with her new limitations. I want to help her find a support group in Las Vegas, NV where she can exchange feels and fears with people going through the same condition but the only one I can find doesn't meet till October. Do you have any suggests?

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Jill Price avatar

Jill Price

My suggestion would be to contact the CMTA and see if there is a branch in your area. It can be very hard to deal with on your own. How old is your daughter?

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Kevin avatar

Kevin

Hello, I am a psychologist on a Navajo Reservation in Arizona. We are pretty isolated and I have a patient with CMT who is looking for an online support group. Do you have any you would recommend. I just met with him for the first time today and would love to get him some resources. We are a very isolated community here but because he does have access to internet, I feel its the best way for him to connect with others who have his condition. Thank you.

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Jill Price avatar

Jill Price

Have you tried CMTa's website, there e may be a branch near by or your local MDA office? I wish you the best!

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Hannah Frazier avatar

Hannah Frazier

Excuse me Jill but my name is Hannah Frazier. I was diagnosed with CMT 1A when I was 14 and it as really started to affect my life sense then. I am now 19 about to turn 20 and I use a wheelchair at school and when I go out most of the time. I would really like to ask you a few questions through email if you wouldn't mind. I noticed that you have known about your CMT since your were 2 and I think I might be able to relate to some of my questions better. My email is [email protected]

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Michelle avatar

Michelle

Hello Jill, Were you ever able to starta support group? If so, would live some information on how you first started.

Reply
Jill Price avatar

Jill Price

No, I have not. I was in contact with the CMTA about support groups. I am still going back and forth with the idea.

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Celeste Smiley avatar

Celeste Smiley

Hi, I am a woman with CMT as well,
I came across your article in reference to starting a support group and this is what my dilemma is as well. Please if you can find the time so that we can chat. I also want to start a support group in my area,

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