United Brachial Plexus Network, Inc.

Only after someone gets hurt is this UBPN help. Which is great people need the help I just want to try to stop the problem before it starts. Does anyone wanna help???

Dont ya think that might be a good thing

KD's daddy,

Preveniton is a difficult prospect, and will not be settled through letters to congress. How would we organize the medical community to run randomized blinded studies to determine which position offers the least likelyhood for causing a shoulder dystocia? Johns Hopkins docs say it would be impossible, because then you would be removing the option for some woman to deliver in a position they desire. The UBPN prevention committee talked with the Johns hopkins docs about this.

We have also contacted every state that offers the information (for free-many charge exhorbitant amounts of money for the info, and some don't even record it) about the rate of injury. How can a prevention program be successful unless we have an accurate assessment of the injury? We found that Oregon had the highest rate of injury according to their hospital discharge records, for the ICF coding of 767.6 the coding for an obstetrical BPI. But we could only get ~20 states. The others charged $ and/or didn't even record it.

We have had conversations with numerous papers about the incidence and said that it is preventable to these outlets.

We put together a pretty good page about prevention, we are working with spotlight on to get info about this injury and its prevention on TV.

We constantly look for ways to get more word out, perhaps you have a connection that won't get our letters to our congressmen thrown out by their aides?

Anyone who has a solid idea for prevention can contact the prevention chairs: Lisa@ubpn.org and richard@ubpn.org.

We would certainly entertain valid suggestions!

My husbend & I were talking about renting billboards that have a nurse with her hand to her lips saying shhhh then it say how many babies will be affected today??? It needs to be comercialized. that is the only way!!!!!!!

Rich why is it you are the only one that makes sense to me? And I think you know what I am trying to say.

I just want it so there doesnt have to be a UBPN. I want BPI to be known like cerabal palsy or have a telethon for it like the Jerry Lewis thing and have maybe BOB DOLE do it . That would be great.

Bob Dole has given some help, even with his office and people trying to help out, we couldn't get the national proclomation done. The beurocracy is insane. The amount of money for CP and downs and other well known groups is enourmous. We don't have the same funds to have the same effort. I truly think it is amazing that UBPN is 100% volunteer and still get the accomplishments done that we have.

These other organizatins have full time paid staff to attack the issues of awareness, lobbying congress, writing grants, producing literature, 8 hours every day , all year long. Large staffs to take care of everything. We unfortunatley don't have that luxary and instead have an unpaid staff of volunteers and a few brave souls from the community who step up and take things one hour at a time when we can.


We wanted to get a petition going, we want to get this spotlight on production complete, we want to try and get a mailing program for our congress, governors. We want to have the resources to mail all the magazines, newspapers. We need to develop a really good media kit. We wanted to start a bigger online store of awareness items also.

The list goes on and on.

Everyone on the UBPN board share the same vision, but we are young. We can't yet be compared to the cerebral palsy organization or the MS or jerry lewis telethon. They have been in existence for decades, established ties with powerful people.

We are trying to do this also. We are trying to establish ourselves with universities, doctors, media personnel. We recently even talked with a reporter from the wall street journal. Hell one of our BOD even went onto the Dr. Phil show, we heard the words brachial plexus injury, erbs palsy and surgery on national TV.

We do alot behind the scenes that noone in our community knows about! We are trying hard. We will continue to try hard. We need to stay together as a community, we need to be supportive of the efforts of all.

For all who have ideas of how to accomplish awareness and prevention step up and let us hear the ideas. Try and be complete on how we may do it-a real plan. A good suggestion for fundraising would be appreciated also!

rich

I hate to say it, but there will always be a need for UBPN. I need it everyday, and my son is 7 and is done with surgeries, but so many things come up. Yes, I would love to make UBPN EXTINCT but these injuries although preventable will always be around as long as woman are having babies... The volunteers at UBPN are doing a great job........THANK YOU !!!!Gayle mom of Brandon ROBPI !!!

Kd's Daddy,

I think your points are good. I wanted to talk to you privately but can't access your e-mail. Could you please e-mail me? dmombpi@msn.com.

Thanks,
Janet

Tell me how I couldve stopped the problem of a BPI before it happened, when it involved my son being injured in an atv accident? Theres not only OBPI here, but people with accidents like...falling (maybe they shouldnt walk) tree limbs falling across their shoulders (maybe they shouldnt have been walking under that tree)people doing their jobs (maybe they shouldnt be working). Does anyone ever ask for help with something such as this until they actually need it? I wasnt searching the internet until it happened, why would I? When we bought the atv it never came with information that said, might possibly cause a TBPI! Maybe I should write every maker of atv's and ask them to put that in there somewhere, or even the possibility it could cause even worse, death. Maybe we shouldnt be driving our cars, oh...think what could happen...

I know...I know...your talking about stopping the problem of OBPI before it happens..but, you never know when its going to happen...and it looks as if its been going on since Bible times and looks as if it will continue the best that can be done...Im glad you have volunteered to help! Hopefully less babies will be injured...got any suggestions on how to stop TBPI??? Quit living, maybe???

Im just glad UBPN was here when I needed them...and like Rich said, they are a young organization still...but I expect to see great things from them in the future...and Id like to be a part of it especially telling people with TBPI, not to give up and not to automatically take that recommendation from an inexperienced dr. that says amputate your arm. Theres hope and theres help...

Janet, maybe you and kd's daddy can get something rolling with the people that matter! The two of you could bring forth some real man power and get this rolling... Thanks for stepping up here.

Courtney