United Brachial Plexus Network

I was wondering if it would be too rude to ask you who and how many you are. I get confused coming here and there seem to be so many different people, so may different nicks, do people use different alias everytime they log on or are there hundreds of you?

You've probably done this a thousand times, but maybe some people like me come by and don't really understand who they're talking to.

I'd like to know who you are, what you seek here, how often you come and post, are you all american or english?

I read in your introduction: "The United Brachial Plexus Network (UBPN) is a registered non-profit 501(c)3 organization devoted to providing information, support and leadership for families and those concerned with brachial plexus injuries worldwide." But then I mostly see posts about the US.

Myself, I am called Catarina, I am 35, I am from Lisbon, Portugal, and the mother of a 6 months old who had primary surgery in May (also in Lisbon). He is doing PT and will now start water therapy. I am a university teacher in urban planning, my husband and I are both doing our phD's in Paris which really does complicate everything a lot more. The baby's name is Sebastiao and he is in slow but steady progress. I'm sure I'll soon see his arm move

I come here almost everyday and mostly read and try to learn about other experiences. I also seek a little bit for people who might feel the same way I do and understand what this is all about.

Catarina,
I am the mother of 3, all in college. My youngest was born in 1984 with severe LOBPI. I live in the USA, Illinois. I only found this web site in July 2003. I am only on in the summer, when my oldest brings her computer home with her. She leaves soon, in mid August. I do not post under a diferent name.

There are many procedures available now that were not, for my daughter. Still my daughter made great gains. I demanded therapy, and did it for over 10 years. She has never had any surgery. Additional info about us is posted on WHAT IT IS LIKE LIVING WITH A DISABILITY IN THE FAMILY, a couple of pages back.

Catarina,

It is good to do this once in a while as the folks who post regularly do come and go.

UBPN has a magazine, called Outreach that comes out twice a year. The subscription is free and if you want to get it, just email me (nancy@ubpn.org). We have a mailing list of a little over 3300 people, so that gives you an idea of the numbers of people that UBPN is reaching worldwide. Only a small percentage of people post on these message boards. We have found over the years that there are some who like this means of 'conversation' and others who come not at all to message boards. Some only read and don't post, and many come and go as their individual time and needs allow.

Let me introduce myself. I am 50, and have a left OBPI. I live in Kent, OH in the US. I've had surgery both as a child and as an adult. I retired almost 2 years ago from my position as Professor at Kent State University where I was the University Archivist and Curator of Special Collections. I spend most of my 'free' time now working with UBPN!

Nancy Birk
UBPN President

Hi, I'm Tammie (and mostly a lurker). I have 2 children 11 and 4. My 4-yr old has a ROBPI and has had 2 surgeries at TCH. We live in VA. I do not post under a different name or guest.

Hi, my name is Barbara. I have 1 baby girl now 17mo (not much of a baby anymore ) She has LOBPI and has not had any surgery to date but is recommended for muscle-tendon transfer in about a year. We live in the US, South Carolina. I only post under BarbH.

Hello. This is Tanya, mother of Amber. Amber is now 21 months old with ROBPI. I only post under this name and no alias. I usually come to this site about every day, and sometimes more often, depending on what my day is like and what I'm trying to accomplish with BPI.

I come here to converse with others who understand, get information (which I have found tons so thank you to all), and I hope that I can help new parents, just the same as others have helped me.

I work as a RN in a labor and delivery unit, so I have a unique perspecitve on this injury as a parent and nurse (I do NOT work now at the hospital where my daughter was delivered).

We live in Upstate NY (not NY City).

I welcome anyone to contact me as desired to converse or ask questions, as I've been known to email people from this site to ask them questions with a great response from them.

I think this site is wonderful. It's definitely been a bonus to me.

Tanya in NY

Hi

My name is Bonnie but I post as Avery's Mom. Avery is my daughter who has ROBPI. She is 2 1/2 now.

I also have a 6 year old daughter and one on the way.

We are of the "international group", from Canada (Saskatchewan).

I had been coming here regularly when I was on mat. leave with Avery and have returned as we're facing some down-turns and surgery soon.

Have a great day.
Bonnie

Hello
I am Krista. Mom of 2 girls. Hannah is 5 and Mariella will be 3 in September. Ella has a LOBPI.

I have been coming on this board since Ella was just a few days old. I have learned so much here and I come back to share my knowledge and learn news things.

We live in Connecticut.

~Krista~

Hi,

I am Kate, mom to Joshua 6 months LOBPI. Joshua has had no surgeries so far. I first came to this board shortly after Joshua was born. We live in California.

Kate

Catarina

I am glad you asked this question. I found this messaged board Dec. 1999. I just turned 60 and was looking for information on my birth Injury. It took me a very long time to figure out who was who. I had no idea that this organization was newly formed. I was shocked to discover that children were still injured at birth like I was. I live in New York I am married and have three children and 5 grandchildren.

When I first discovered the message boards there were so many Kathy's I decided to post under my given Kathleen. I soon discovered that there were many Kathleen's posting at that time it added to the confusion. Finally I decided to post just under Kath and I will not change my name again.

UBPN is an all volunteer group and those of us who work for UBPN are not paid. We do it because we want to support families and individual whose lives have been impacted by this injury. Because of these message boards I now have friends from all over the world. Sometimes I give the support and sometimes they have given me the support and information I needed.

Kathleen Mallozzi
UBPN Secretary