The 2006 TMA Distinguished Service Award: Dorocaks, Hamiltons, Hoges and Vietzkes

In 2004, The Transverse Myelitis Association began the tradition of recognizing distinguished service to our organization and our community.  Chitra Krishnan was so very deservedly the first recipient of this award.  The Officers and Board of The Transverse Myelitis Association were honored to select four wonderful families for receipt of the 2006 TMA Distinguished Service Award. The award ceremony was held during the dinner banquet on July 21st at the 2006 International Rare Neuroimmunologic Disorders Symposium in Baltimore.  The award was given to Cathy and Dan Dorocak, Jeanne and Tom Hamilton, Pamela and Morgan Hoge and Amy and Darian Vietzke. 

Most organizations recognize the contributions that are made by their members.  It is hard to imagine that there could be an organization that would have more compelling reasons for this recognition than The Transverse Myelitis Association. All of the work that is done by the TMA for our community is performed by volunteers.  No one is ever provided with compensation for their work.  This is the case for the officers and board members, for our medical advisory board, for our national and international support group leaders and for the many people we have in our community who are involved in awareness and fundraising activities.  What gets done for our community depends entirely on the sacrifices of time, energy, creativity, and resources of our members. 

The Hoges, Dorocaks, Hamiltons and Vietzkes have been central to the work of the TMA almost from our inception and their work continues today in spite of the tremendously difficult issues that they face every day of their lives with a child who has been severely impacted with TM.  These families each have a child who got TM before they were one year old.  The Hoges, Dorocaks, Hamiltons and Vietzkes are being recognized for their work in raising awareness of the neuroimmunologic disorders, in providing information and support to other parents of children with these disorders and for their fundraising activities.  The Dorocaks started and participate in the Reading for Rachel Program; the Hamiltons hold Kevin’s Cause.  Both programs are critical to the TMA’s goal to raise money for research on the neuroimmunologic disorders.

Whenever there is a young child stricken with TM, ADEM or NMO, within the first five minutes of my talking to the parents, I provide them with Darian and Amy’s, Morgan and Pamela’s, Dan and Cathy’s, and Jeanne and Tom’s names and telephone numbers.  I urge them to get in touch with these four families as quickly as possible.  I know that they will learn a great deal from these parents – they’ve been through it all.  And they will receive the compassion and emotional support that they need.  These are among the most sensitive, compassionate, caring, kind and generous people I know – and I know many.

And then in the course of my referring to these parents, I always get the following intense pangs of guilt.  I know that by having a parent of a newly diagnosed child call these families, they are going to review, reflect on and relive their own experiences with their child.  They will have to go through the horrors of the early onset and the incredibly painful challenges that they face every day with their child with TM and with all of their children, because these disorders impact whole families – everyone’s life is dramatically changed.  The rest of my guilt is suffered by the thoughts and feelings I have about referring a parent of a child who is having a remarkable and good recovery to four sets of parents who had children who were very seriously impacted by TM.  I know that this is an extremely difficult experience for them. 

I feel very badly about all of this, but I keep sending them.  And over the many years I have been doing this, these parents never ask me to stop.  They are always available to help others who very desperately need them.  They understand what these other parents are going through in a way that I can only imagine.  What they offer to these parents in the way of information and support is beyond kind and generous.  The TMA, in this very small way, is grateful for the opportunity to recognize their invaluable and critical contributions to the TMA community.