United Brachial Plexus Network, Inc.

Hello everyone, I was just reading in the Awarness Outreach that I could look into starting a local support group through UPBNs within reach program. I was happy to read that since I have been thinking about how I would love to do something like that in my area, but never knew how or where to start. I am almost positive there are none in this area. I am not sure if I would be the right person to do this though b/c I have only had experience with my daughters BPI for 3 months now, although I feel like I know so much about it....especially the emotions that go along with having a child be born with this injury. Since we haven't had any surgeries I wouldn't be a big support on that issue! Anyway, I was just wondering if I could have some advice on this and understand more about the within reach program. I feel as if I really need to do something like this to help support other moms...especially new ones as we all know how it feels to first learn of this injury! Anyone who could help would be appreciated. You can email me also, LDYBUG4134@aol.com
Thanks for reading, Krista

Hi, Sounds like a good idea. My daughter was injured during delivery. She is now 16 1/2 months. She did not need surgery either. But I did go through alot of emotions which seem to be coming back to me since I started on this message board. I live in New Jersey, I seriously doubt if N.J has any support groups for BP. I feel like I have been recieving tons of support from this messageboard. It feels good to talk with someone who has a child that understands the array of emotions that go through your mind. It is funny because most of the mothers here have heard the same stupid lines and excuses. I guess that is what they reach the doctors in medical school. Well let me know what you come up with. I would be interested. Suzann

Hi
I think one of the best gifts you give the children with obpi is a support network.
I am an adult with obpi and never met or spoke to anyone about Erb's Palsy until two years ago when I found UBPN.

I am 62 a wife a mother and a grandmother. I attended several "picnics" some with and some without doctors and I learned so much. I especially learned that so many ways I compensate is common to this injury and meeting other adults with it really helped. It amazed me! I am glad you both found the board it will be a great help to you in the future.

Good luck in forming a support group. It will really help both you and your children. And yes who better to help form the group then bpi mothers. I wish my Mother had some support and I had met others with this injury when I was young.
Kath

Hello, Krista and Suzann. Actually, there's a New England BP Support Group (which might not be too far from NJ), there's a tri-state (CT/NY/NJ) support group, and there's a PA support group (that meets not too far from Phily I believe). I don't know if there are any support groups strictly for CT or NJ, but you could always be involved with the existing support groups that cover those states. I'm sure the present leaders would welcome the help. There was an e-mail address set up at NewEnglandBPI@hotmail.com for the NE group, not sure about the others. Also, there's a support group listing on this site as well as on Francine's site. Oh yeah, there's also a support group for NY (not sure if it includes other states, but if it's close you could certainly join their gatherings too). I just read about an upcoming event being planned for the NY group -- I think it was under the "Dr. Nath" thread. The NE group had get togethers in Aug 2000 and Oct 2001, not sure what's planned for the next one (or when it will be). The tri-state group usually has a picnic in July or Aug (so far I haven't been able to attend that one). Of course, if you want to start up your own groups anyway, that's okay too, but just wanted to pass along the info. I had. Hopefully, the people who lead these groups will come forward with more info. for you both. Hope to see you both in the chatroom tonight. -Tina