United Brachial Plexus Network

I just read the Presidents Corner page. I'm really disapointed that we are not having "just camp". Those of us with little ones will be unable to attend "city camp". It will not be restful for me to drag my kids to DC and stand there trying to get the attention of politician who don't care one whit about my son's pain and struggle. I have never been able to come to camp before, so I was really looking forward to being able to attend. Yet, now I know I can't come. My kids won't want to sit there while we rally. Yes, it is a good awareness week idea, but not a good camp idea. I want to be in a quiet place with lots of safe happy activities for kids of ALL ages, not just teenagers. I love DC, don't get me wrong, but a 5 year old, 3 year old, and 2 year old in Washington DC? I don't think so. I realize I'm probably reacting pretty strongly and will probably get a bunch of critacism, but this is just how I feel. Isn't there a way to organize a political rally during awareness week with people who have kids old enough to both understand and participate and let the rest of us have our fun family camp?

I have just been through a hellish week in my BPI journey, and am sorely disapointed that I will have to skip yet another chance to be with other families and friends who struggle as I do. It is so disapointing.

Hugs,

Kari

Kari - today when I cleaned I looked at the camp picture from this past camp and I had similar thoughts....

I know that they won't be going back to upstate NY although I would love to go back there.... but the thought of being in Wash DC in the heat of the summer with me not walking well and Maia so young and not interested in museums makes me roll my eyes, too.

Maybe I'm not envisioning it the right way.... but when and how will we gather? what will the kids do ? will it just be a sightseeing trip?

keep on visualizing Lake George and those adirondack chairs and can't seem to move past that....

Kudos for voicing your opinion.

-francine


Maybe UBPN can put up a poll about this and see what the community feels about this.

We will still have activities for the children. It will just be a different locale! We are trying to envision something a bit different that will incorporate all the aspects of a 'camp' but with a different focus to draw national attention to our cause. Don't worry it will be great!

Nancy Birk
UBPN President

Kari,

Please don't get down on the idea of the "city camp" just yet. This camp, as well as previous camps" take all the time inbetween camps to plan everything. It will be wonderful and child care is a top priority--we've already brought up the topic in discussion for the D.C. camp childcare before we got to the N.Y. camp, so you see, we want everyone there to be able to enjoy the experience while furthering the cause.
It would be too difficult to have "camp" as we have had in the past in the summer and then turn around and expect everyone to travel to D. C. in October.
It's an important time for elections, so it's an important time for our awareness, as well. It's hard to explain in full detail here, but trust that we are all working to make this a wonderful experience for all.

Peggy

Camp UBPN 2005 in DC area

Don't make any judgments yet! We are in the very early stages of planning.

We have two missions to accomplish.
l. Camp with relaxing and rewarding experience for all.
2. Our National Proclamation - we are trying to coordinate both so that the largest number of bpi impacted families will be there for this moment.

Our first goal is always to get the world to be AWARE we are here, we are not going away, we will be heard.

If we, as bpi injured people and families, do not speak out in a very large group we will never be heard. That is why UBPN is working very hard to get our information in front of the world and those who could change things for us. We all need to be part of this group if anyone is going to listen. It is not enough for just a few adults to show up and speak about the impact of this injury. It is up to all of us to speak up and show up in the places where it counts.

I loved Lake George (of course, I am a New Yorker) it was quiet and wonderful and relaxing but no one knew we were there! So many times on this board I read about people wanting to fight for us and to let the world know that we are here. I think DC is the place to do it. There is power in numbers and in being united and speaking out in our nations capital. The lawmakers have the power to require reporting, allocation of funds for research and require teaching of proper birthing methods and funding for special needs. With this will come a recognition for us as injured persons without making us jump through hoops for disability. Its time we stood up and were counted among the injured with rights to proper medical treatment and prevention studies. But if we sit quiet in some safe quiet place no one is going to stand up for us except us and we need to be seen as well as heard. We as a community need to come together and speak out where it counts.

This can all be accomplished with proper planning and a good site for this camp. It will be just as great and maybe even better than the last camp. Instead of coming home from camp and trying to figure out a way to get the word out, after this camp, we as a community will feel we have been heard and took an important step. This camp will have everything the children and families need we would not plan it any other way.


Kath
Member
UBPN Board of Directors

Kath or Nancy,
Would you mind explaining what exactly a "National Proclamation" means? And the importance of this. Maybe it should not be called camp, but something else? I understand some people are not keen on the idea. Maybe if someone explains how this will impact the BPI community. Where will the funding come from? How are the politicians involved? Why is it so important for us to be there? I agree on the fact that the children are not going to want to march around with picket signs. Maybe I'm completely off here. I just hear Rally and that's what comes to mind. We need more clarification. I know it's early in the game. Maybe you could just shed some light on the importance:-)

Please don't set your mind against camp this early in the planning. I think that to judge it now would be not only unfair to the spirit of camp, but unfair to yourself.

We have had many discussions about ways to incorporate the idea of a National Proclamation into the spirit of camp. One of the ideas that has been tossed out is a family picnic, where we invite our various representatives and senators to join us for a meal and to see our kids in a natural light. At no time have we suggested that kids would carry signs or have to traipse up to the capitol steps for a rally.

In addition, one of the items we discussed is to try and get the president, whomever it may be at that point, to have a signing in the White House of the proclamation with selected children (possibly a writing contest) in the photo op. How great would that be for Awareness!

As far as activities, we will have traditional camp activities but families will also have the opporttunity to visit our nation's capitol if they so choose. It will not be an either/or situation.

Admittedly, this all will take hard work and isn't set in stone. But it takes hundreds of hours and many volunteers to plan and coordinate camp. So I would encourage anyone who would like to be part of the planning to step forward and join us in this effort. I say this with the kindest heart -- it is easy to critique something, it is much harder to jump in and make it work! Join us to make this the best camp ever -- one of fellowship with families and one of Awareness!!!

Kim

Allison

WOW ... LOL... I am not a picket line person! Sorry if that was the impression I gave. I am so opposed to putting children on picket lines... I think we need to get the attention of the Media. There are other ways of doing it besides a rally or protest.

We are requesting the President to sign a National Proclamation for Brachial Plexus Awareness Week. We will apply for this in the very near future. We would also like to have someone from each state apply for Proclamation in all 50 states. It is a matter of being in town for this and getting press and perhaps meeting with our congressmen to support us.

There is no extra funding required for this. The funding we need is the normal funding for camp so that we can give the scholarships for those in need. It would be wonderful if someday we could run camp and it would be free for all bpi impacted but we do not have the funds for it.

This project will take time, energy and volunteers who are willing to handle their states and write to their Representatives and Senators asking for funds to be allocated for research, tracking and prevention.

Camp will still be camp as far as I can see the only difference is we will make Awareness and the Presidential Proclamation an important part of camp.

This camp is still in the process of being planned as Kim said it will take hundreds of volunteer hours to put into place so that it can be just as great a camp as our last one.

Kath

I just want to say, I have seen the work that goes into camp, since I have attend the last two, it does take a lot of volunteers to put a camp together.

I hope everyone will want to help make camp 2005 the best ever. Please don't jump ahead and think you already know what is planned as the planning stage has just begun, yes there are ideas about what we would like see happen, but we are always open to more suggestions.

Having camp in DC is a great idea, but it doesn't mean we are going to run around with little ones tagging behind us from place to place. We will still have classes, speakers, activities for all children plus babysitting. How many classes, etc will be decided as we start forming scheduals, again all this is still in the planning stages.

Please don't make a decision about coming to camp until you see it all in writing in front of you in a future Outreach. We have 2004 to finish planning a great 2005 camp.

Lets keep our sprits up about how great camp is going to be and help us with ideas, suggestion and volunteering.

Hugs to all,

Karen
UBPN Board Member

UBPN Board:

Can you describe what you envision for camp in Wash. DC? Will we be staying at a camp or at a hotel? What kind of activities, speakers are you planning? What are you thinking of having the little guys do? Please give us more details about camp. We won't hold you to the details but if you could map out a possible schedule it would help us understand what you are planning.

You're all saying that a lot of work goes into putting a camp together but please remember that attendees also have to spend time planning for the cost of camp, and for some families this requires two years of juggling, budget setting and additional work hours.

One more question: was the community or past attendees of camp polled on the Washington DC idea? and were there any other choices given?

Thank you.