United Brachial Plexus Network, Inc.

That sounds great to me. My daughter is a tbpi and I'd love to talk with other parents about the situation....that's so very important. We need to learn how to help them to empower themselves and so forth. I know I'll be there.

Shelley BSW

Hi Christopher~
I completely agree with you about the need to increase public awareness, even if the likelihood of finding a "cure" may be in the distant future with the public resistance to stem cell research and other unknowns. But it is completely amazing to me that I have never heard of this injury before it literally crashed into me, and I have encountered no information I have not sought out on my own. That does need to change, and if those afflicted are not moved enough to make that happen, I cannot think of who would be willing to make that happen.

I, too, have found that groups such as the Christopher and Dana Reeve Paralysis Resource Center and the Spinal Cord Injury Foundation seem to be more organized towards public awareness and progress. Brachial Plexus Injuries can fall under their umbrellas, or we could try following their models. Social and emotional support is very important, and I'm not deeply involved enough in this group to know if that is the only goal of it's organization. But it would be nice to see a wider breadth, to increase public information, provide resources and opportunities for those with similar injuries and just for greater solidarity and comfort for those injured. All of these things bring us that much closer to chances for restored movement, increased sensation, decreased pain, and regaining every bit of our lives.

(And by the way, it will be one year to the day tomorrow, April 18th, that my accident occurred. Not that I'm counting...)

What exactly is this camp thing though, at the risk of sounding naive? It isn't fully described in any post.

~Genevieve

Genevieve

Happy Crappy Anniversary!

Joke Joke!

I hope you're hanging tough out there and that your surgery is starting to make some progress. It's a slow road and patience and more patience are the training wheels needed to ride this one smoothly.

Most of the toughest stuff is behind you I hope and that good healing and recovery are making their presence known.

There is a link for last year's camp on the front page, in the center column, under "Events & News" heading.
http://ubpn.org

I'm wishing you the very best! Hoping you're well and thriving. And if not, that you will be soon!

Christopher

If only we had their money to move forward they way the Reeves Foundations has.
Just one point of information ... They did not have anything regarding BPI information until we contacted them. They were so kind, interested and immediately responded by having a link to us on their site.

Kath robpi/adult

Hi Court,
I know for us it is not only financially hard but also time wise it is difficult. Insurance doesn't cover her trips to the Mayo or anywhere for treatment. We went from never leaving our little corner of the world to suddenly having to fund trips to Minnesota and take the time from work. It is difficult to throw another trip into the year and it is hard to justify unless you take the family and treat it like a family vacation. We desperately wanted to go to last years in Washington State but things just kinda fell apart at the end and we just couldn't do it. I know for us I would love to speak to parents of children with a traumatic injury and how it has impacted their lives. Caralyn loved meeting you, Liz and everyone else you guys really made her feel special and she still talks about it. She would have loved to have met more teenagers or young adults who are dealing with this injury and how it has turned her life completely upside down. I know that it is probably a very difficult thing trying to have a little bit of everything for everybody at these camps because there is such huge variation of the injury from complete paralysis to having bicep to having limited hand and so on and so forth. Keep up the good work and I know that we will try to go to next years but Im just not sure. Caralyn graduates high school next year and I promised her and a friend a plane ticket to Hawaii for graduation, but we would love to take the entire family to Florida and maybe go to Disney World before or after camp, we will have to wait and see if we can swing it.

These responses are great and are EXACTLY what I am looking for! I am going to talk with the BOD about these.

Christopher... I thank you for all of your research and time spent trying to find a 'cure' for this so that no one would ever have to go through what we have. It is AMAZING the stuff you find and participate in. UBPN would LOVE to see a cure! PLEASE keep in mind that we are a volunteer run organization with VERY limited funds and people. There are times that we have a hard time getting done the things that we already do!! We are not like other organizations that get massive funding and have PAID employees. Most of us around here do this on the side! SO that really makes it hard. We need sleep,family and personal time. I would LOVE to hear, and would be open to, any suggestions you may have to bring UBPN to the next level.

With that being said, we are ALWAYS looking for new people to help out with different things. So if anyone in interested or has any suggestions... PLEASE feel free to shoot them my way.

Courtney

Hey Court,
I knew I should have made my comment clearer. I thought about it the next day, but never got around to adding to it.

In no way was I targeting the UBPN.org board of directors with my comment. I'm fully aware that everyone working here is doing so at their own expense and time, and out of their own sense of charity and good will. I apologize for it reading that way. It was more or less directed towards all of us that have been afflicted with this injury and trying to rouse a collective impetus to move forward and towards the future reality of a cure (or at the very least an improvement over current treatments and awareness).

I think the best way to do that is something to the nature of piggybacking on to an organization like the Christopher and Dana Reeve Paralysis Foundation. I don't think there is enough of us to have an impactful voice on our own. I believe the strongest proponents to that voice would be that of the parents of OBPI babies, since it is such a tragic and unnecessary condition, and the force generated by them would be a lot more cohesive and centered than it would be by just the TBPI group alone.

These are just ideas I'm throwing out there towards all of us. I don't believe in displacing responsibility. So these comments & questions are equally thrust at me as well. I'm still paying hospital bills 5 years after the fact and am busy trying to pick up the pieces of an altered life, so I'm fully aware that nothing comes easy.

Maybe we should just considered the discussion of direction and commitment, and that would be a start? First things first. I guess you got to start somewhere. I don't know, I've never done this before either.

Christopher

Christopher,
I just wanted to say I read all your posts about research etc..., and speaking for myself, its not that Im not interested or dont care enough, being fairly new to this, its just way over my head alot of times and I dont feel educated enough about it to respond. But, thanks to you and others, and what time I have to research and read and try to understand, Im slowly learning. Thanks for sharing ! You are a tremendous help to this board !

Hi!

Is camp also good for adults with traumatic bpi?
I am 37, yrs old, had bpi since I was 21.
where are you planning to have the camp?

wwhere can I see info reg camp?

thank you for your help.

Gunnar

Hi Gunnar,

Yes, camp is for TBPI's, we hold camp every 2 yrs and next camp will be in FL Oct 2009.

Once a contract is signed, I will post camp information under the camp board.

If you have anyother questions you may email me at karen@ubpn.org

Hope this helps,

Hugs,
Karen
BOD Camp Coordinator
karen@ubpn.org