United Brachial Plexus Network, Inc.

One thing I did forget to say -- thanks for your input! All input is valuable and will be taken into consideration. We appreciate ideas and suggestions on how we can make camp better each time its held and welcoming to as many families as possible. I hope the 2005 camp will end up being one that you decide you would like to attend as you watch the many plans come to fruition!!

Kim

I just don't know how a "camp" at Washington D.C. would work. We were there about four years ago and we were overwhelmed with everything there is to see and do. And it was very expensive....EVERYTHING was ...food...hotel...subway...etc. My idea would be to make it two seperate events. You could have camp within driving distance (maybe 45 minutes to 1 hour away) Washington D.C. like on Thurs., Fri., Sat. and Sun. Then have the other on the following Mon. or Tues. That way the parents could decide if they would want to stick around for the other stuff or not. I would love to bring my family to camp but we are a family of 5 so cost is a BIG factor. I just don't know how you could stay in or around the city at reasonable cost for families. And the lower the cost the more scholarships you can give to families who need them. Just my 2 cents.

The board of directors and camp committee have been really fair in creating a camp every two years. They've chosen different areas of the country so that people from each end can have an easier trip of it. All the camps so far have been in the summertime, outdoorsy and "campy". But this camp coming up in 2005 is way different - a city camp hasn't been done yet.

I, for one, would like to know the details - to make sure that this will be a camp that Maia would like to go to. I will have to know logistics to know if I could physically be able to walk the distances involved or find another means to get me around. Camp is an expensive ordeal for a family with kids and in my household we have to budget for these kinds of things two years in advance. City camp sounds like it's going to be very expensive. Will it be so or is that just my perception?

I think that because it is SO different - that the thought processes should be shared - not just the details three months in advance once the planning is completed and set in stone. You're hearing from a few people in the community (during the busiest days of the year meaning that more would probably post but they're not on the computer this week) that there are questions being raised - and all the questions are very valid.

I think it would be great if UBPN held a couple of online "town meetings" so you could share with us what the plans and goals are and explain it further so that we have a better understanding of this new type of camp means and so that we can voice back to you our thoughts, concerns, possible fears, etc. Communication is good.

Having town meetings like this can also help you in your preparation for camp. If people learn more about what it is that you are planning, they may also want to step up to join the camp committee and help create this new kind of camp.

And what happens in the town meeting if you share the plans and 200 people come forward and say that they think it's a bad idea and are not interested in coming? Wouldn't it be a good thing for you to know this in advance - BEFORE all the planning and money goes into this?

UBPN - Please consider an on-line town meeting or two or three.

-francine

Thanks everyone for all the input and ideas.

To be honest, the board (who all volunteer their time) is still recovering from the gargantuan amounts of time and effort it took to put on the last camp as well as putting out the last issue of Outreach and are spending some long needed time with our families. That means we haven't given much thought yet to Camp 2005 other than to decide on the general location and to some preliminary scouting of locations in the DC area. We had made it a goal to announce the next camp at the end of the last camp and we did that with a lot of advance discussion of the board, our executive committee and our InterACTION committee which functions as a camp committee. We have based much of our decisions about future camp from the evaluations of the last camps and we have been analyzing those responses.

So ... we appreciate the input as I said, and when we turn to camp planning in 2004 (we are all taking a much needed break), we will certainly consider the suggestions submitted here.

If anyone wants to get further involved with camp planning, please consider joining our InterACTION committee. And please feel free to contact me personally with any suggestions that you might not feel comfortable posting publicly (nancy@ubpn.org)

As far as costs go, we want to keep camp as affordable as possible for families. That is a most important consideration.

Nancy Birk
UBPN President

I think that having the next camp in DC is a great idea. I am so excited about going in 2005. I have never been to any of the camps before, and I am excited about it. I don't think it really matters where we have it, as long as we can come together. I also like the idea about DC, because maybe then, if the President could see us standing together, maybe he will become more aware of us. Maybe then we could make even more people aware. This is our time to make a difference, and there is no better place then the White House. So many people have worked very hard on awareness issues. We are getting the word out. What's a few days ruffing it in the city with our families for such a meaningful cause. Thanks to everyone who work so hard to make things like this picnic happen. Just my opinion.
Thanks for listening,
Kelly

Thank you to everyone for your input and ideas and please don't judge anything yet. Planning is only in the very early stages.

We want to hear ideas and suggestions and even if someone would like to volunteer to help when the opportunity comes up.

I am in Phoenix Arizona and trying to travel to Ny for camp 2003 and now Washington DC in 2005 is very expensive to get to but worthwhile. Please just keep an open mind and help us.

Sincerely,
Tami Schenck
UBPN Board of Directors

I'll be glad to help out in any way that I can. I live in NoVa...20 mins from DC. Also, in 2005 my daughter will be 12 and she can help with the babysitting. I may be able to help out in other ways as well. Just let me know.

Nancy...whatever I can do to help with, I'd be glad to do so. Wherever we go anymore cost money and we all know this. I'd love to work on helping plan and Courtney has said the same thing. Just to let you know you can count on us. When I look at all the research we've had to do to find out about bpis, what's a little more research to make it possible for all to attend. We are all important and do need to be heard. Let us know what we canhelp with!!!!!!!!!!!!!

Thanks...you guys are doing a terrific job!
Shelley, Court's mom

I am excited about the opportunity to take Alek to DC for him to represent himself and others with this injury. Our children have been side lined for too long, and with great stregenth in numbers, I find this very encouraging. We missed camp in New York, having just come back from Houston, and we were sad to not see everyone, but at the same time we felt like we are in a different place with Alek and his injury now. I feel like we need to be doing more, and we are spinning our wheels in Colorado. I can understand how parents with younger children feel, but I think prevention of this injury, and fair treatment for our children already affected should be the goal now.We will plan on joining you in DC and please be encouraged that this is still a great opportunity for family time and checking out the sights!!
All the best-
Sandra