Summer Camp for Kids with TM, ADEM, NMO or ON and their Families: August 19 – 24, 2007

We are thrilled to announce The Transverse Myelitis Association is partnering with Victory Junction Gang Camp (VJGC) to hold a bi-annual summer camp for kids (through 16 years of age) with any of the neuroimmunologic diseases and their families.  The dates for the first ever TMA Family Camp are August 19 - 24 (Sunday through Friday), 2007.Victory Junction Gang Camp is located near Greensboro, North Carolina.  Victory Junction Gang Camp is a member of the Association of Hole in the Wall Camps.The original Hole in the Wall Camp in Ashford, CT was founded by actor Paul Newman and opened in 1988.Mr. Newman was also one of the founders of Victory Junction Gang Camp.  The camp was started by Kyle and Pattie Petty to honor their son, Adam, who was killed in a racing accident when he was just 19 years old.Pattie Petty is the Executive Director of this wonderful camp that is closely associated with the NASCAR community.

The association of Paul Newman camps has long served chronically ill children in and near the communities in which they are located.  Victory Junction Gang Camp is very extraordinary in its eagerness to serve the pediatric TM community, including families, regardless of geographic location or extent of disability.  This wonderful opportunity is being offered to all of our families across the United States and around the world.  The camp is totally accessible, including the activities – fishing, tower climbing, horseback riding, mini-golf, swimming, arts and crafts, and much, much more.  The facilities and the setting are truly phenomenal.  Full accommodations for ventilator dependent kids are on site as are fully staffed medical facilities. 

We would like to recognize and offer our gratitude to Dr. Peter Sim, Medical Director of Victory Junction Gang Camp.  The TMA Kids Camp Planning Committee held extensive discussions with Dr. Sim during our search process.  Dr. Sim became a strong advocate for our community and was instrumental in creating this incredible opportunity for the TMA.

The purpose of the camp is to provide the children and their families an opportunity to have a fun recreational vacation.  If you had the chance to be in Columbus in 2001, you know how wonderful and important it is for these children and the parents to be able to spend time with each other and share experiences.  The camp will offer these children and the families an opportunity to create friendships and support that will last a lifetime. 

We have received a commitment from Dr. Kerr that he will be attending camp with his family.  We are going to attempt to have some of the other physicians from our Medical Advisory Board with a pediatric focus attend camp, as well.  We know how important it is for our families to be able to spend time with the physicians and their families.  We hope to have these doctors available to answer your questions.  It is possible that we would plan a few presentations in order to provide information to parents on the latest research in restorative therapies and short and long-term treatment and symptom management practices. 

Here’s the catch:  No one attending the camp is allowed to pay for anything.  This whole week of camp, along with life in the climate-controlled and accessible cabins, all of the meals, and all the activities you can handle is completely free of charge to kids with the neuroimmunologic disorders and their brothers and sisters and moms and dads.

You will, however, need to pay for your transportation.  We are hoping that many of the families will be able to drive to North Carolina from the Midwest and from along the east coast.  For those who will need to fly in, Piedmont Triad Airport in Greensboro, North Carolina is approximately 20 miles away from the camp.

Leslie Cerio, Shannon O’Keefe and Stephen Miller are the TMA Kids Camp Planning Committee.Leslie has a young daughter with TM; Shannon’s teenage sister has TM, and Stephen got TM when he was a young teen.  They will be visiting Victory Junction Gang Camp in February and will be meeting with the camp directors and staff in order to prepare and plan for our camp experience. 

The camp will accommodate about 30 families on site.Victory Junction Gang Camp will allow us to bring a total of approximately 200 people from our community.  This number includes the physicians and their families.  A number of families will need to stay in hotels in Greensboro, and will be transported back and forth from camp every day for all of the activities, programs and meals.Which families stay in the cabins will likely be based on medical need and the difficulties involved in transporting some of the children.

As the camp can accommodate only a limited number of families, acceptance will be determined on a first come, first accepted basis. 

If you are interested in attending we need to know.  We are aware that confirming a date well over a year in advance may not be possible, but please let us know of your intentions.  As space is limited, you need to let us know if you are even interested as soon as possible.  If you know you are coming, that’s great – let us know.  If you are planning to come but cannot commit yet, that’s great – let us know.  If you are interested in attending but are not sure, that’s great – let us know. 

If you would like to come to the Victory Junction Gang/TMA Kid’s Camp, but your family cannot afford the transportation costs, you need to make us aware of this need during the application process.  Victory Junction Gang Camp has a special relationship with Angel Flight.  Angel Flight will transport children and their parents to and from Victory Junction Gang Camp, weather permitting, at no cost to the patient/family.  Families have to meet the following qualifications: 1. Angel Flight requires 7 business days notice; not to include holidays. 2. The trip cannot exceed 1,000 nautical miles from departure to destination. 3. All passengers must be able to walk, board the plane and not require any medical care in route.Patients must not require a ventilator or IV.O2 is permissible but must be provided by the patient/family member.Wheelchairs are difficult to secure in a small plane, and Angel Flight will need to know whether your child uses a wheelchair.  4. There must be financial need; the family cannot afford any other means of getting to Victory Junction Gang Camp.  5. Passengers must not be claustrophobic.If this is the first time traveling on a small plane or flying at all, Angel Flight must be made aware. 

All requests for the Angel Flight Service to Victory Junction Gang Camp are made through Angie Campbell, the Camp Coordinator.  Angie will make all of the arrangements with MaryJane Sablan, the Senior Mission Coordinator at Angel Flight.

Victory Junction Gang Camp will not begin to accept applications until January, 2007.  Please do not contact the camp until we ask you to make out an application.

What can you do now?

You can check out the Victory Junction Gang Camp web site and learn about this incredible camp.

www.victoryjunction.org

You can contact Stephen Miller and let him know who you are and your interest in attending.Again, as space is limited, you need to contact Stephen as quickly as possible.  Please provide Stephen with the following information: parent’s full names, postal address, email address and phone number; the name and age of your child that has TM, ADEM, ON or NMO, and the names and ages of siblings who might be attending.  Stephen is going to compile a mailing list which we will be using for future communications about TMA Kids Camp.

You can start raising money.Everything in the camp is free – but if we put up some families in hotels, we are going to need to bear that cost.Every penny that we raise above the cost of what we need for the camp will go into our research fund.

If you are not able to make the trip to Victory Junction Gang Camp because you cannot afford the cost of transportation, and you do not qualify for the Angel Flight service,  please consider having a fundraiser in your community to help you raise the money to get to camp.  Please involve your families, please involve your local service organizations, please involve your community religious organizations.  When your friends and family learn about this opportunity, they are going to want to help you make this happen for your family!

You can go to the TMA web site, click on the TMA Logo Store and then load up on 2007 Kids Camp items.

Please regularly check the 2007 Kids Camp web page from the link on the main page of the TMA web site.  We will regularly update the site with the latest information about our camp planning.

Please also participate in the 2007 Kids Camp bulletin board.  As we get closer to our camp experience, the staff from Victory Junction Gang Camp will drop in to the bulletin boards to answer any questions you might have.  The bulletin boards are also a great way for families to communicate about the camp experience, including any plans to coordinate or share transportation to North Carolina. 

This is more than an announcement … this is an invitation!