TMA family Camp October 6 - 9, 2011

The Transverse Myelitis Association Family Fall Weekend will be on Thursday, Oct 6, 2011 (afternoon arrival) through Sunday, Oct 9, 2011 (noon departure) at Victory Junction Gang Camp located in Randleman, North Carolina.

Camp is for children with TM, ADEM, and NMO who are 6 – 16 years old, their siblings and their parents.  If you have a child who is older than 16, we will consider their participation on a case by case basis.  We want for everyone to be able to come … so we will bend over backyards to make it happen.  Keep in mind that you applying to VJGC … the TMA can advocate, but decisions about who is accepted to camp are made by VJGC. 

At the present time, VJGC is telling me that they don’t want applications sent to them before June 1.  If that changes, I will let you know.  Please plan to get your application sent in on June 1.  I believe the camp now has an online application that you can complete electronically and that you only have to send in your medical application – and the parts that need to be filled out by your doctor.  Please get everything done as close to June 1 as possible. 

When you decide you are going to come, please send me an email letting me know that you are going to apply.  I need for you to send me the names of everyone in your family who is applying to come, and include everyone’s genders and ages – and include all of your contact information.  Please don’t send me this information until you are certain that you are going to apply.

There are spaces in the cabins for 32 families … we are going to have many more than 32 families who want to come.  I asked VJGC to please give us the largest number of people they can accommodate and to allow me to work with all of you to arrange to have more than one family on the side of a cabin.  I would love for everyone who wants to be able to come (and is accepted by camp) to be able to attend.  For us to accomplish this feat, I will need for all of you to be open to sharing space, to be flexible and understanding.  We’re talking about three nights … at camp.   

If you have complex travel arrangements and need to have your application reviewed early and receive approval early, please let me know and I will advocate with camp to try to accommodate your needs; and particularly if you are coming from outside of the US and need to apply for a travel visa.

The camp is in Randleman North Carolina, near Greensboro, and the airport to fly into is Piedmont Triad Airport in Greensboro.  If you are going to need to be picked up at the airport, all of these travel arrangements will need to be coordinated with VJGC. 

Please do fundraising to cover the costs of your travel if you cannot afford to pay for your travel expenses.  If you are concerned about going to family and friends ‘another time,’ please talk to me about it.  I will offer you some ideas to make this easier for you.  It doesn’t take that much effort to raise the money you will need to cover these costs … and it is worth the effort so that you can be there.  Please don’t miss this opportunity because you don’t think you can afford it.  Call me.

We are inviting many of the physicians who have been to camp before, including Drs. Kerr, Greenberg, Kaplin, Pidcock, Levy and Becker.  We are also hoping that Drs. Birnbaum and Pardo are going to be able to make it from Johns Hopkins.  Dr. Peter Sim is no longer the medical director of VJGC, but we are hoping that Dr. Peter will be able to make it to our camp as a volunteer.  The education program will take place at camp, likely on Friday and Saturday mornings.  You will have access to the docs throughout the weekend.

I’m excited that we’re going back to camp.  I’m excited that we’re going to be able to get everyone together again this year.  I’m most excited for your children.  There won’t be swimming at camp, but the weather in October is really fabulous.  When we were at VJGC for the retreat weekend last October, we were in shorts during the day, but it wasn’t summertime hot and it was cool at night.      

If your child is not old enough to come to camp, please consider coming to camp as a volunteer.  You would have a chance to meet the other parents, you would have a chance to meet the doctors … and you will have an awesome time.  If you aren’t certain and would like to talk to me about it, please call me.  The volunteer applications are on the VJGC web site.  BE SURE YOU APPLY FOR OUR WEEKEND!  And please let me know that you are applying so that I can advocate for you.

I hope that you are all doing well and we’re looking forward to seeing you this fall. 

Sandy Siegel

President

The Transverse Myelitis Association

ssiegel@myelitis.org