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June 13, 2011

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June 13, 2011

My son was born with a bpi 3 years ago and it was very important to reach out to talk to someone else that also had a child with a bpi. Before I found the site, I thought this injury was rare and there was no one else in our area with it. I found out how common it was and there were lots of families in our area to connect with! It has truly made a difference with our journey!

The Great!

I've personally experienced the results of this organization in...

My life.

Ways to make it better...

If I had to make changes to this organization, I would...

none

June 7, 2011

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June 7, 2011

My Son was born last year with shoulder dystocia and as a consequence has Brachial Plexus Palsy on the left side. I had never heard of either of these and when the doctor's told me what had happened had no real idea of what it all meant. I didn't get a true understanding of what it meant or how it would affect us until I found UBPN. It has been a constant source of information and support for our family. Dococtor's do not know the answers to so many questions regarding this injury, so to share other people's experiences is a beautiful thing!

The Great!

I've personally experienced the results of this organization in...

I no longer feel alone. I live in a rural town and have no support so have relied on UBPN to share, vent and gather information. It has helped me deal with my emotions tremendously. Sharing other people's stories helps me to keep it all in perspective.

Ways to make it better...

If I had to make changes to this organization, I would...

So far so good

More feedback...

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

How did you learn about this organization?

Google

When was your last experience with this nonprofit?

2011

June 7, 2011

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June 7, 2011

i was 48 years old and never heard of a brachial plexus injury. didnt even know i had a brachial plexus. then one day i had surgery for something else and the surgeon stretched my brachial plexus. i woke up from surgery with a limp an extremely painful arm and hand. the doc told me i would get the function back in a week. ha ha ha yeah right. it has been 13 months now, and i still have no feeling or strength in my arm and hand. i found UBPN about 4 months after my injury. i found out about the testing and treatments that are available. my surgeon refused to do ANYTHING other than PT. i DEMANDED some testing. if i would not have found UBPN, i would still be in the "do nothing" state and still in excrutiating pain because i would never have known about the treatment options available. the people on this site are very knowlegable about this injury and every learns from everyone else about how to cope with this injury and negativity is not allowed against anyone else. but you can vent and be as negative as you want to be and other people on this site will pick you up and be there when no one else understands the frustrations that go along with this injury

The Great!

I've personally experienced the results of this organization in...

i am no longer in excrutiating pain because i found out about what can be done to help this injury heal faster

Ways to make it better...

If I had to make changes to this organization, I would...

let more people know about where to go for this type of injury

More feedback...

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

How did you learn about this organization?

searching the internet

When was your last experience with this nonprofit?

2011

June 7, 2011

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June 7, 2011

My daughter incurred a Brachial plexus injury when she was born 5/2002. Her PT told me about UPBN. I found so much information and support through this organization. I didn't know anything about BPI/ Erb's Palsy. This organization has led me to Doctors and therapies that I would not have know about otherwise. Their Outreach magazine is read cover-to-cover. They are the strongest voice the BPI community has to raise awareness and to lead prevention initiatives.

The Great!

I've personally experienced the results of this organization in...

Personally I've learned how to help my daughter now and what we need to prepare for in her furture.

Ways to make it better...

If I had to make changes to this organization, I would...

If I had to make changes, I would give them more money so they could do even more prevention clinics with in the OB/GYN community.

June 7, 2011

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June 7, 2011

Finding UBPN in 2004 saved my health, mental and physical. I was 66 yrs old at the time and had grown up believing I was the only person with this "Birth Defect/Injury". I did not have a name Erb's Palsy until I found UBPN after I posted on a Birth Injury web site and Kathleen M emailed me within an hour. I've been living with Depression and much physical pain that I was told was all in my head...so finding this wonderful network of information, Support and love I'd never had in my 66 years...VALIDATION and ACCEPTANCE.
I enjoy being a caring cheerleader to new families that find our network.I find Mothers and Fathers are so dedicated to not only their own children, but are devoting time to support and volunteer to spread awareness of this LIFETIME OF CARE Birth Injury that is PREVENTABLE.

The Great!

I've personally experienced the results of this organization in...

Making life long friends and a adopting chilidren as my own "Grands"....a whole new Family replacing the VERY lonely life I had prior to April 2006.

Ways to make it better...

If I had to make changes to this organization, I would...

Have a Grant writer on the Board of Directors to assist raising money for families to attend Family Camp FREE.

June 7, 2011

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June 7, 2011

When we left the hospital with our first born, we were told to take the wait and see approach with our daughter's injury. We didn't even know it was an injury. Finding the UPBN's web site changed our lives. Through them, we were able to educate ourselves and the people around us. We were able to find a local therapist with experience with this injury. Which was a blessing, because the neurologist that we saw had zero experience with a brachial plexus injuries. Instead of waiting, she started physical therapy at 17 days old. That was the greatest turning point in her recovery. Our daughter will never be at 100%, but she is closer to it than we ever thought she could get. The UBPN changed her life.

The Great!

I've personally experienced the results of this organization in...

My daughter's recovery process. Through the UBPN, we received education that changed the course of her recovery process. She did not need surgery until she was 3. If we didn't find UBPN, she may have needed surgery earlier with poorer results.

Ways to make it better...

If I had to make changes to this organization, I would...

Raise more money for them to do their magic!

June 22, 2010

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June 22, 2010

We were sent home from the hospital without being told our daughter was injured. We lived in a rural area and she was our first child. We had never heard of a BPI before or knew anyone who had. We were lost. I thank God for the support and information we got through UBPN. IT was a place to learn, to vent frustrations, and become part of a caring, supporting community. My daughter is now 9 years old and thanks to UBPN I can look her in the eye and say we have done evertythiing we possible could to help you heal.

The Great!

I've personally experienced the results of this organization in...

Support for and understanding of my daughter's health condition.

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

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