help with awareness and legislation

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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Argentina
Posts: 12
Joined: Tue Dec 14, 2004 12:24 pm
Injury Description, Date, extent, surgical intervention etc: My son Franco (now 17) suffers from left OBPI. He has undergone 3 operations already and though his recovery has been quite good, the injury still shows itself.
I have a support group in my country called Paralisis Braquial Obstetrica -PBO Argentina. You can find us in Facebook.
At the moment I´m really working hard to pass a law to guarantee parents are informed of this injury when the babies are born. Unfortunately in my country we are not informed about these injuries.
Location: Buenos Aires, Argentina

help with awareness and legislation

Post by Argentina »

Hi! I´m a mother from Argentina and I have been a member of ubpn for may years already. I would like to get in touch with somebody from UBPN who can help me with legislation passed in your country (I have been contacted by a Senator from my country and I guess I'll need your help so as no to miss this golden opportunity!!!)Besides, I am working hard with a support grpoup and we´d like to organize a gathering or a day-long seminar or workshop and I also need some help as regards how to approach possible speakes.Finally I want to ask for permission to translate your awaress brochure to be able to distribute it in hospitals.Thanks a lot and as we say as a farewell in our support group "a no bajar los brazos!!!"
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Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: help with awareness and legislation

Post by Kath »

You can contact Rich@ubpn.org he is the current President of UBPN.

I wish you luck with your efforts to gain mandatory reporting. I truly hope you can accomplish this goal.
Kath robpi/adult

Kathleen Mallozzi
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momofsara
Posts: 6
Joined: Sun Apr 11, 2010 10:40 pm
Injury Description, Date, extent, surgical intervention etc: My daugther has a ROBPI and is now 1.5 years old. She has not had any surgery as of now but goes through extensive therapy.

Re: help with awareness and legislation

Post by momofsara »

Patricia..you are amazing, I am so glad that you are willing to help translate the information for UBPN. I know that the Spanish speaking families will really appreciate your dedication. Let us know what happens in Argentina with the legislation. Abrazos! Betsy
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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: help with awareness and legislation

Post by richinma2005 »

Hi !

It sounds like you have a great opportunity. Unfortunately, so far there has been no legislation passed in our country in regards to BPI's. There was an attempt made by Kathleen Kennedy in Iowa several years back. The Bill's language can be found in the following links:


look at bill 251 and 252 on this link:

http://www.legis.state.ia.us/GA/78GA/Bi ... index.html

bill 251

http://www2.legis.state.ia.us/GA/78GA/L ... rrent.html

bill 252

http://www2.legis.state.ia.us/GA/78GA/L ... rrent.html


As for contacting speakers, you will need to determine what the seminar will focus on. Will it be prevention of OBPI, treatment of OBPI, awareness of BPI and/or support for those with BPI. Once you determine the focus, then identifying speakers would be more obvious (Midwives or OB's, surgeons, Life counselors etc).

As for permission to translate the Brochure, I think that is a wonderful idea, UBPN would be pleased to include the translated material on our website. Once more, if any other people in our community would like to translate to their native language we would like to encourage that.

My email is richard@ubpn.org if you have any specific questions. Please don't hesitate to ask.

Rich Looby
President UBPN
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momofsara
Posts: 6
Joined: Sun Apr 11, 2010 10:40 pm
Injury Description, Date, extent, surgical intervention etc: My daugther has a ROBPI and is now 1.5 years old. She has not had any surgery as of now but goes through extensive therapy.

Re: help with awareness and legislation

Post by momofsara »

YEAH!!!!!!:)
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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:
Contact Carolyn J

Re: help with awareness and legislation

Post by Carolyn J »

I'm sending you my best wishes, good thoughts and a Prayer for your success. If you can do it there in Argentina it certainly can help us here in the USA.

Carolyn J/age 71 :mrgreen:
Carolyn J
Adult LOBPI
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