The Transverse Myelitis Association will be holding a Children's and Family Workshop in Columbus, Ohio from Thursday, July 18 - Sunday, July 21, 2002. The TMA Workshop will focus on children from infancy to their early twenties and will include their brothers and sisters and their parents. Most of the parents have never met another child or a parent of a child with TM. These parents and the families often feel isolated, frightened and alone. It is imperative that we offer them this opportunity to make connections with others who can offer them emotional support and encouragement.

Children with TM face special challenges in their lives, as do their families. The TMA Children's and Family Workshop has two primary purposes. The first is to provide information and strategies to parents regarding the various treatment issues required by the symptoms of TM. In addition to the many physical symptoms parents need to address, they are also faced with significant social and emotional issues, which surround having a child with a devastating illness. The Children's and Family Workshop will also attend to these important issues through presentations by experts from a variety of medical and other disciplines. TM is a rare condition, and the parents with children who have TM are spread out in communities all over the country and all over the world. Offering them an opportunity to spend time together to share information and support is one of the most important benefits that will result from the workshop.

The second major purpose of The TMA Children's and Family Workshop is to offer children an opportunity to have a fun weekend and to meet other children who have TM. Most of these children have never met another child who has their condition; most of these children feel very isolated in their experiences. The Workshop will provide them with the opportunity to meet other children with TM and to foster relationships and support that can last a lifetime.

We have assembled a parent planning committee that has been working on a program agenda. Cathy Dorocak and Paula Lazzeri are heading the group, which is composed of Cathy and Dan Dorocak, Paula Lazzeri, Jack and Joanne Callahan, Jeanne and Tom Hamilton, Deanne and Dick Gilmur, Mary Troup, Neil and Wendy Ross, Steve and Colleen Blandford, Gail Hirsch, Pam and Morgan Hoge, Judy Baker and Shelley and Cody Unser. We have begun the process of inviting experts who will be making the presentations to parents; Friday and Saturday will be the primary presentation days. A tentative program agenda is included in the newsletter. We are already very excited about the physicians, therapists and psychologists who have committed to participate in the workshop.

We want the workshop to be an opportunity for parents to learn and to find support relationships in this very special community of families. We want this weekend to be a great time for the kids! We are in the process of arranging to have occupational and physical therapy students serve as companions for the children who have TM during the weekend while parents are in the workshop presentations. These students would assist your children during the fieldtrips and the other activities that we are planning for the children over the weekend. We are also arranging to have nurses available on the fieldtrips and the other activities to perform catheterizations and to assist with any other special needs for the children. Additionally, we have requested that a physician go on these fieldtrips with the children. Every effort is being made to assure that the children have a fun and a safe time, and that parents can enjoy the presentations with peace of mind.

Our tentative plans are to have Thursday, July 18th be a travel day for the families. The registration and a dinner will be held Thursday evening. We are hoping that we can have the occupational and physical therapy students attend this dinner and be assigned as the companion for each of the children with TM. This dinner would provide parents and children the opportunity to meet their companions and to exchange information. In this way, the children would also not be meeting this person for the first time as they were leaving their parents on Friday. Again, brothers and sisters will be included in all of the activities. We are sensitive to the issues that surround time and attention for these very special siblings; we are going to work very hard at being inclusive, and providing them with lots of care, love, and attention.

The Friday, July 19th fieldtrip will be to The Center of Science and Industry. This is a wonderful science museum for children. You can learn about the museum and show it to your children by visiting their web site at http://cosi.org/html-site. Dr. Kathryn Sullivan is the President and CEO of COSI Columbus. Dr. Sullivan is a former astronaut who has logged more than 500 hours in space. She is a specialist in deep-sea geological research. We are certain that your children are going to find the museum a really fun and fascinating experience.

Our fieldtrip on Saturday, July 20th is going to be to the Columbus Zoo and Aquarium. It is a great place. Jack Hanna was the Executive Director of the Columbus Zoo from 1978 - 1992; he remains the Director Emeritus. I have requested that Mr. Hanna meet the children during our visit; we'll find out how many of your children are staying up to watch the David Letterman Show! His secretary told me that he is in Los Angeles during the summer. I asked her to put it on his calendar. When he finds out how important your children are maybe he will come back to Columbus to meet them. The web site to show your children the Columbus Zoo and Aquarium is http://www.columbuszoo.org/.

We are going to offer some alternative activities for some of the older children and young adults. We have a group of recreation therapists from Children's Hospital, The Columbus Parks and Recreation Department and The Adaptive Adventure Sports Coalition (TAASC) who are developing an agenda of recreation activities for the children. We would like for the children to be exposed to a wide range of activities; we want them to observe and experience all of the possibilities. We will also arrange for the recreation therapists to have activities for the children who go on the field trips later in the day when they return from COSI and from the zoo.

The summer time in Columbus is filled with riverfront festivals, concerts, sporting events, and fairs. We will keep a close watch on the calendar, and if we identify any fun opportunities for the older children and young adults, we will attempt to arrange for some of these activity choices, as well.

Sunday morning promises to be a very special time for both the parents and families who attend the workshop. The parents are going to have the opportunity to engage in a roundtable discussion; and the doctors will be present to participate in the discussion and answer your questions. We are arranging a separate roundtable discussion for the teens and young adults. The younger children will have some really fun activities to participate in on Sunday morning.

The parent planning committee is also organizing an adaptive equipment exchange. We will provide you with more information about this activity later in the year. They are going to arrange for an exchange of equipment in Columbus. Perhaps more importantly, they are going to establish a virtual equipment closet so that parents can offer and look for different pieces of equipment as their children outgrow or out-develop certain items, while other parents may identify the need for those same items.

We are currently negotiating a contract with the Clarion Hotel in Worthington, Ohio; this is a northern suburb of Columbus. They have offered us a rate of $74.00 per night. The TMA will handle the registration and billing process for all of the members attending the workshop. As the TMA will be direct billed for the rooms, there will be no taxes paid on these rooms; your rate will be $74.00 per night. Additionally, if you arrive early or stay after the workshop, your room rate at the Clarion will be $74.00. The Clarion has established this discounted rate for TMA members for any time you stay at the hotel. As the TMA is going to be handling the registration process, it is important that you do not contact the hotel to register. We will begin the formal registration process in January. If you are interested in reading more details about the Clarion, please go to their web site at: http://www.alliancehospitalityinc.com.

It is our hope that we are going to be able to raise sufficient workshop funding that we will be able to provide for all of the meals. The children will be provided lunches at COSI and at the zoo. We are also hoping not to have to charge a registration fee. We would like to raise enough money to cover all of the expenses of the workshop. That is the goal.

The Clarion has been wonderful in providing us with a great deal of flexibility. The location of the Clarion is also great. It is located just fifteen minutes from the airport and is also close to the Columbus Zoo. The hotel is located just off of the Columbus outer belt and is close to a lot of shopping and entertainment. There is a shopping mall directly across the street from the hotel. Also, the Clarion has four vans; they do not charge a fee for transportation to and from the airport. If the numbers warrant, our workshop will be held in their large ballroom and they will be providing us with four breakout rooms. Three of the breakout rooms will be used for activities for the children. The fourth room is going to be used as a hospitality room. It is located directly across from the ballroom. The room has two bathrooms, a sink, and it is possible that we will move a bed or beds into that room, as well. Parents will be able to take care of any needs their children may have during the workshop activities during the day or evening without having to return to their rooms.

The Clarion has four accessible rooms. We are going to offer those rooms to people who do not have a companion to assist them with transferring through doorways or to assist them with transferring in the bathroom. We are also going to give priority for these rooms to the young adults. Thus, it is critically important that if you are a young adult that you travel with a companion who can assist you with transferring. Almost everyone who attends the workshop is going to be in a regular room. The doorways into these non-accessible rooms are 35 inches wide. The bathroom doorways in these rooms are 27 inches wide. Please come with a companion and please attend with a companion who can assist you in the bathroom. We have enclosed a form, which asks you to identify any special needs. Please provide us with a thorough response and include any equipment that you might require, such as a shower bench, for instance. I do not believe that there are grab bars near the toilet or shower. You are going to need to be with a companion with whom you are going to be comfortable assisting you in this environment. I am sorry for this inconvenience. We would never be able to find a hotel to accommodate all of the members who are going to attend the workshop. We are going to communicate as much detail as we are able about the hotel accommodations. We are hoping that if you are prepared, it will be less inconvenient.

There is one set of elevators in the hotel. We are holding the rooms on the main floor; the floor on which the workshop will be held. Hopefully, all of the TMA members will be accommodated on the first floor. If we need additional rooms in the hotel, we will attempt to locate people on other floors who are not in wheelchairs, and we will attempt to locate you in rooms near the elevators. We will do the best we can to accommodate your needs and to create a great experience for your families.

We want to make it possible for as many families to get to Columbus as possible. One of the concerns people will have is the long-distance travel for your child with TM. Please consult with your doctor about these issues. The other concern people will have is the financial burden associated with transporting your families to Columbus. We share this concern for those who are going to have to fly into Columbus from around the country and from around the world. We have a small group looking at the possibility of finding discount airline rates for the families, and perhaps, having the airlines donate the flights for children who have TM. If you are able to assist us in this critically important activity, please get in touch with me. If you work for an airline, if you have some experience in this area, we would greatly appreciate your help. Finding an affordable way to get people to Columbus is going to be one of the most important factors determining the level of participation we will have for the workshop. Please help us in this effort.

While the Workshop may seem like a long way away, it isn't. The time is going to fly. We want to get as many families to Columbus as possible - from all over the world. That is going to require a great deal of planning for all of us! So, I am asking that we start all of this planning now. I am asking those of you who are interested in attending to fill out the registration form that is included with this newsletter mailing, and get it returned to me immediately. Please do not procrastinate; our planning efforts require that we have some sense of the numbers of family and the numbers of children who will attend the workshop, and any special needs we should be prepared to accommodate.

The Children's and Family Workshop promises to be a wonderful experience for everyone. To make it happen, we are going to need to raise a great deal of money. There are many people involved in fundraising for this event and for TM research. Please get involved. As you read in my editor column, I am on a mission. I do not believe it is mission impossible - not even mission improbable. But our success depends on you. Please make a difference for these beautiful children; and make a difference for yourself.