Whatever happened to Awareness Week ?

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Whatever happened to Awareness Week ?

Post by admin »

There used to be so many things going on and now nobody even mentions it, not even from UBPN. How sad is that.
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: Whatever happened to Awareness Week ?

Post by admin »

I am just waiting for the main page to be updated and I don't get that bear from 2005. What is that?
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: Whatever happened to Awareness Week ?

Post by Kath »

The Bears are still for sale so if anyone is interested please order early for Holidays.

While the dates are not corrected on our Home Page all the information on our site is updated on a regular basis.

We are still in the process of updating our software and this website.

Kathleen Mallozzi
Member BOD


Message was edited by: Kath
Kath robpi/adult

Kathleen Mallozzi
User avatar
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: Whatever happened to Awareness Week ?

Post by richinma2005 »

Awareness week is always the same week in October. It is true that UBPN BOD is overworked and things slip by. Awareness week is by and large for the community. We have a list of things that could be done for awarness week on our pages. These are events that could be organized by anyone in their own community. We always encourage others to do their best to get the word out. This year my involvement included interviewing dads for an article that will be in outreach, collecting an inspirational story for outreach, and also communicating with a doctors team to get an additional article, which will be in Outreach. We mail out over 5000 copies, so hopefully that helps to spread awareness.

I am also involved with my daughter who at age 9 wants to speak to her entire school district through a program of disability awareness about BPI's. She also is trying to raise money for the people who want to come to camp and cannot-- due to funds. These two things are her own thoughts, so at age 9 she is spreading awareness and is in the spirit of what awareness week is all about.

Why don't we make this threadinto what we have done as a community to spread awareness throughout the year, and use this week to acknowledge all we have done to spread awareness!!
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: Whatever happened to Awareness Week ?

Post by Carolyn J »

GREAT IDEA,Rich!!

In that spirit, I have contacted our local Newspaper this past year with all of the information and pictures from Camp 2005 and a "brief" personal story. Unfortunately it was not accepted for print but it DOES feel good to have done it.

Also, I have taken to wearing my silver BPI Bell Pin on the collar on my LOBPI side when I "dress up"...(out of my sweats!!). Both that, and me having to carry a ball at all times in my LOBPI hand, starts converstions and/or questions. I guess you could say I do "Awareness" one person at a time every chance I get to talk about BPI's.

HUGS all around!,
Carolyn J
Adult LOBPI,68, WA (State)
Carolyn J
Adult LOBPI
User avatar
hope16_05
Posts: 1670
Joined: Tue Jul 01, 2003 11:33 am
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Location: Minnesota
Contact:

Re: Whatever happened to Awareness Week ?

Post by hope16_05 »

I would like to thank the BOD for all that they do, putting together an entire magazine all by volunteering their time is an amazing thing! It should not be the BOD "job" to get awerness threads started, they are busy people just like the rest of us.
There, I have said my piece,

now for awareness around here I wear my splints every day and I also have circles on my arm to mark my e-stim placements and almost every day I get the opportunity to explain to some one about bpi's. Just this morning I explined bpi again and this past weekend at work several times. Colorful splint and circles start a lot of conversation.

Thanks again BOD Members!! You are all awesome! Also thanks to any one else who spreads awareness!!!

Hugs,
Amy 19 years old ROBPI from MN
Amy 28 years old ROBPI from MN
User avatar
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: Whatever happened to Awareness Week ?

Post by richinma2005 »

I wanted to add, I came up with an idea for an awareness (fundraising) item that will be offered through the next Outreach and soon on the website). Anyone can use it, and definitely will help contribute to get awareness out there, or at least start conversations!

Just a tease until the Outreach comes out

-rich
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: Whatever happened to Awareness Week ?

Post by Carolyn J »

Rich,
You ARE a Tease!!

I'd like to add my THANK YOU too, to ALL of the Board of Directors who work sooo hard on everything for EVERYONE in our BPI Family. I feel Love and Support every day.

HUGS all around,
Carolyn J
Adult LOBPI
Carolyn J
Adult LOBPI
User avatar
brandonsmom
Posts: 1401
Joined: Mon Nov 22, 2004 4:43 pm

Re: Whatever happened to Awareness Week ?

Post by brandonsmom »

I think I know what it is .....and if it isn't what I Am thinking, I thought of a great idea TOO!!!! GAYLE
Marydroz
Posts: 26
Joined: Thu Aug 24, 2006 10:02 pm

Re: Whatever happened to Awareness Week ?

Post by Marydroz »

I don't know what it is but if I did know what it is I would have had that idea too.
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