Petition to stop BPIs - anyone see this?

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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dmom
Posts: 363
Joined: Tue Jul 06, 2004 2:36 pm

Petition to stop BPIs - anyone see this?

Post by dmom »

I came across this petition today. It is looking for signatures on a "stop BPIs" petition to the AMA. I had never come across this before, but I thought it was a great idea! Whatever can be done to fight BPIs, I'm all for it (as I know you all are, too).

If anyone wants to add his/her name to the petition, here is the link:

http://www.petitionspot.com/petitions/bpip

Janet
User avatar
Brenda333
Posts: 217
Joined: Mon Nov 18, 2002 6:59 pm
Injury Description, Date, extent, surgical intervention etc: Daughter has global palsy (c5-T1 injury) 5 surgeries at Texas Children's by Dr
Laurent, Shenaq, and Nath. 1st Surel graft 2nd Intercostal transfer 3rd Latisimus Dorsi transfer with subscapular release 4th Pec release 5th Bicep lenghtening, (which weakened her bicep, and contracture returned.) Has went through serial casting with fair results. Her arm is about a hand shorter then the other. She has limited hand function. (able to grasp) Arm stays pronated. Unable to get to neutral. Now dealing with sternoclavicular subluxation. All that being said....She is very functional. She is a very determined, strong, tenacious young woman. Now 15. She plays the trumpet, french horn, drums, guitar, and now learning piano. Has always played on a softball, and basketball team. Until recently, for fear of further injury due to the sternoclavicular subluxation. (separation of colarbone from sternum) Not sure if all this is spelled right.
--
Location: Wisconsin
Contact:

Re: Petition to stop BPIs - anyone see this?

Post by Brenda333 »

Wow! This is a surprise to me. I made that petition up about a year ago, under a fake name, and such to show it as an example for the UBPN Prevention Committee. The UBPN Committee thought it was too soon, and that the petition wasn't direct enough. I deleted it. I'm not sure how it is up, but it is.

I'll see what I can find out. I think the idea is still a good one, but I'm affraid I didn't do this. I don't know why it is there.


Brenda
Brenda
BPI Connection
http://www.freewebs.com/wbpic
kd's daddy
Posts: 171
Joined: Tue Jul 12, 2005 3:38 pm

Re: Petition to stop BPIs - anyone see this?

Post by kd's daddy »

I appreciate someone getting the ball rolling. UBPN is a great website and helps thousands of us but I think they forget they have POWER. Please be more aggressive ! Such as this petetion or letters to the medical board. As I said it is a GREAT website and WE have POWER in our numbers. Can we stop jabbering and do something to help the future. Let me know I will Jabber to help the future!
kd's daddy
Posts: 171
Joined: Tue Jul 12, 2005 3:38 pm

Re: Petition to stop BPIs - anyone see this?

Post by kd's daddy »

If I can possibly sign a new petition or write someone to help a single child I will. Lawsuits are not the answer. We need the doctors more educated about the problem. Some dont know what BPI means.
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Petition to stop BPIs - anyone see this?

Post by Carolyn J »

Hello all,
I remember hearing at a workshop at Camp 2005 in Washington DC, that it will take having a Lobbist in Congress for the BPI Cause and Awareness. Knowing a "little bit" about how Congress works, I do believe,too,that it will take that to achieve a true and working Awareness.
Hugs & Camp 2007 or Bust!,
Carolyn J
Adult LOBPI
Carolyn J
Adult LOBPI
cbe411
Posts: 1393
Joined: Sun Jun 01, 2003 8:27 pm
Injury Description, Date, extent, surgical intervention etc: MVA in 2001, nerve graph in 2002, Median Nerve Transfer in 2004 and an unsuccessful Gracillis Muscle Transfer in 2006. I am living life and loving it! Feel free to contact me :)
Location: Grosse Pointe Woods, MI
Contact:

Re: Petition to stop BPIs - anyone see this?

Post by cbe411 »

Anything is possible with TEAMWORK! THe volunteers here that help keep things going only have so many hours in a day. We also have families, friends, and jobs (most of us) that we need to have time for also!

The more volunteers we can get, the more we can accomplish! Anyone has any time to share volunteering, we can use the help! Email info@ubpn.org if you have some time!

COurt :)
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richinma2005
Posts: 861
Joined: Thu Sep 29, 2005 12:00 pm
Injury Description, Date, extent, surgical intervention etc: Daughter Kailyn ROBPI, June 14, 1997.
Surgery with Dr Waters (BCH), April 1999 and in February 2012
2 more daughters, Julia (1999), Sarah(2002) born Cesarean.

Re: Petition to stop BPIs - anyone see this?

Post by richinma2005 »

As a co-chair of the prevention committee, I should comment that we have entertained this idea for a long time. As a new committee, we have begun to develop a reasonable communications plan which includes getting the word out about these injuries and how to prevent them. UBPN as a group has adopted language into our mission statement that supports prevention as one of our visions. How we approach that needs a solid plan of action. This particular petition is incomplete and in fact is just portions of our prevention web pages pasted together. I am not sure if it the exact one Brenda presented to the BPIPP committee, but as a committee we all agreed that we needed to work on it more. Our plans, once solidified, and passed through UBPN BOD will be shared with our community and of course support will be needed to meet the lofty goals of having a major impact on the prevention of these uneccessary injuries.

Rich Looby
VP UBPN
Co-Chair BPIPP
dmom
Posts: 363
Joined: Tue Jul 06, 2004 2:36 pm

Re: Petition to stop BPIs - anyone see this?

Post by dmom »

Brenda,

I didn't realize this petition was a "work in progress" - I just found it while googling and thought it was something the BPI community would be interested in knowing about. Sorry if I pre-empted any ongoing prevention efforts! I think it's a wonderful idea.

Janet
User avatar
Brenda333
Posts: 217
Joined: Mon Nov 18, 2002 6:59 pm
Injury Description, Date, extent, surgical intervention etc: Daughter has global palsy (c5-T1 injury) 5 surgeries at Texas Children's by Dr
Laurent, Shenaq, and Nath. 1st Surel graft 2nd Intercostal transfer 3rd Latisimus Dorsi transfer with subscapular release 4th Pec release 5th Bicep lenghtening, (which weakened her bicep, and contracture returned.) Has went through serial casting with fair results. Her arm is about a hand shorter then the other. She has limited hand function. (able to grasp) Arm stays pronated. Unable to get to neutral. Now dealing with sternoclavicular subluxation. All that being said....She is very functional. She is a very determined, strong, tenacious young woman. Now 15. She plays the trumpet, french horn, drums, guitar, and now learning piano. Has always played on a softball, and basketball team. Until recently, for fear of further injury due to the sternoclavicular subluxation. (separation of colarbone from sternum) Not sure if all this is spelled right.
--
Location: Wisconsin
Contact:

Re: Petition to stop BPIs - anyone see this?

Post by Brenda333 »

Sorry for all the confusion. At present I can't find a way to take down the petition. All I am currently able to do is make the petition unsignable. This is not a registered petition with Petition Spot. Sorry again for all the confusion.
Brenda
Brenda
BPI Connection
http://www.freewebs.com/wbpic
User avatar
Brenda333
Posts: 217
Joined: Mon Nov 18, 2002 6:59 pm
Injury Description, Date, extent, surgical intervention etc: Daughter has global palsy (c5-T1 injury) 5 surgeries at Texas Children's by Dr
Laurent, Shenaq, and Nath. 1st Surel graft 2nd Intercostal transfer 3rd Latisimus Dorsi transfer with subscapular release 4th Pec release 5th Bicep lenghtening, (which weakened her bicep, and contracture returned.) Has went through serial casting with fair results. Her arm is about a hand shorter then the other. She has limited hand function. (able to grasp) Arm stays pronated. Unable to get to neutral. Now dealing with sternoclavicular subluxation. All that being said....She is very functional. She is a very determined, strong, tenacious young woman. Now 15. She plays the trumpet, french horn, drums, guitar, and now learning piano. Has always played on a softball, and basketball team. Until recently, for fear of further injury due to the sternoclavicular subluxation. (separation of colarbone from sternum) Not sure if all this is spelled right.
--
Location: Wisconsin
Contact:

Re: Petition to stop BPIs - anyone see this?

Post by Brenda333 »

This petiton is closed and is no longer accepting signatures.
Brenda
BPI Connection
http://www.freewebs.com/wbpic
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