Children’s Database

The Transverse Myelitis Association has initiated an important project to collect information for a pediatric/young adult TM (recurrent TM)/NMO/ADEM/ON data base.  The information we are collecting will be used for the following purposes:

1. To develop a contact list that will be used by the TMA to notify and recruit families and older teens and young adults for the family camps and the older teen/young adult retreat opportunities, such as those that were held at Victory Junction Gang Camp;
2. To develop a contact list to recruit for pediatric studies and clinical trials related to TM/NMO/ADEM/ON; and 
3. To develop a directory that can be used by TM/NMO/ADEM/ON families to share information and support between families in similar situations.

This project is being directed by Linda Malecky.  Linda’s daughter contracted TM at the age of two in 1999. 

If you have a child (25 years old or younger) with one of the rare neuroimmunologic disorders, we are requesting that you send us the following information: 

• Parents’ names
• Postal address
• Parent’s phone
• Parent’s email
• Name of child with TM/NMO/ADEM/ON
• Diagnosis (TM, NMO, ADEM, ON, recurrent TM)
• Child’s birth year
• Year child contracted TM/NMO/ADEM/ON
• Age at onset
• Child’s phone and email
• Birth year of brothers and sisters
• Medical facility where child’s care given

The TMA is very aware of and sensitive about the short and long-term privacy concerns surrounding the information that we are requesting from you about you and your children, especially as it relates to a directory.  We propose the following to address these concerns:

1. The information provided will not be incorporated in the TMA website in any way;
2. Your family will only be included in the directory at your request;
3. The directory will be published and mailed only to members who agree to be included in the directory;
4. Only the following information from the data base will be included in the directory:

• Parent’s names
• State/Country where living
• Child’s diagnosis
• Age (birth year) of child with TM/NMO/ADEM/ON
• Parent’s email
• Parent’s phone

The TMA believes that it is extremely important for families (including the children with TM/NMO/ADEM/ON) to be able to find other families and children for information and peer support, which is why we are collecting information for a directory.   However, even with the limited information and distribution we are proposing for the directory, we realize that you or your children, now or in the future, may be concerned about being identified as someone with TM/NMO/ADEM/ON.  We will only include those families who specifically indicate that they want to be included in a directory.  Please provide the data base information regardless of whether you want to be included in the directory or not.  This will ensure that you are contacted when camp or retreat opportunities arise or if there are studies or trials available that may help your child. 

If you have ideas about additional information that we should be collecting for the database and/or including in the directory, please let us know. 

If you would like to participate, please send your information to Linda Malecky via email: LAMALECKY@VERIZON.NET.  If you do not have internet access, you can send Linda the information via the postal service:  107 Tweed Way, Harleysville, PA, 19438. 

When you send us your information, please make it clear as to whether you would like to have your information listed in the pediatric TMA directory.

If you have any questions or concerns about the project, feel free to call Linda (215-855-3488) or myself (614-766-1806). 

We have tried to identify as many children as possible in our community, and Linda has attempted to reach many of you via emails to request this information.  We believe that this project will help us better serve the families in our community by making you aware of important opportunities and by facilitating a support network for our families.  We are grateful to Linda for her willingness to make this critically important project possible.