The TMA Membership Directory and Privacy on the Internet?

The information we provide on our web site and in our publications to our membership is one of the most important functions of The Transverse Myelitis Association.  When you share your information in an In Their Own Words Column, you change lives.  I have no doubt about this, because I hear from people every day who are inspired and informed by these writings.  The access our support group leaders provide to people in their communities is invaluable.  To know that you are not going through this experience alone or to find support and information in your community is truly a blessing for people. 

Sharing information in our publications and on our web site is a selfless, kind and generous act, and we are all grateful for your participation.  It is also very important to understand and accept that once this information is posted on our web site, it is available to anyone who has a computer and internet access across the globe.  This ubiquitous access is the incredible value and also the bane of the information technology age.  

So, we want and need for you to be generous about sharing this information, but we also want for you to be informed and judicious about making these decisions to share information.  If you do not want to be found in a web search or you do not want for your information to be identified in a web search, please do not write an article for the newsletter or journal and please do not volunteer to be a support group leader.  In addition to the information in our publications, it is important to bear in mind that any postings you put on a message board or in a list-serve group can also be accessed through a web search.  It is almost always the case that if you are wanting anonymity in your life, the less you put out there electronically, the better, and that includes email messages, because once you hit that send button, you have no control over what the person does with that information on the receiving end.

It is also critically important to bear in mind that The Transverse Myelitis Association does not put membership information on our web site or post it electronically anywhere.  We publish the directory in paper copies and we mail these directories only to our members who are listed.  We send electronic copies of our member information to the people who do our mailings around the world, but they only receive the information for the people for whom they do the mailings.  They do not receive the entire membership database.  We expend a great deal of effort in protecting your information and limit to the extent possible, the electronic versions of this database.

If you want privacy, we do what we can to help you achieve that end.  Please help us by making informed decisions in regards to what you submit for publication and what you post on the web site on our message boards and in the list serve groups.  The TMA functions so effectively as a support network, because so many of you are willing to share and to help others.  We urge you to continue to do so; we depend on your willingness to do so.  But we don’t want for you to participate in this sharing, if this activity is going to compromise any concerns you might have about privacy.  Be smart and be realistic about how the internet works and what is private and what is public about the internet.