Many of you won't know, but at the beginning of last year I was diagnosed with a rare disease called Transverse Myelitis (TM) which is a rare inflammatory disease causing injury to the spinal cord with varying degrees of weakness, sensory alterations, and autonomic dysfunction.
Whilst on a trip to Melbourne I suffered loss of sensory feelings in both legs that made walking very painful and difficult. 5 months on and I have recovered well but have been left with neuropathic pain in my hip and legs.
The Transverse Myelitis Association (TMA) is celebrating its 20-year anniversary with a fundraising campaign to create new clinical centres of excellence and to fund education and research into the disease.
My goal as part of the campaign is to ask 20 family and friends to donate just 20 US dollars. Click on the donate button if you wish to help find a cure for this disease!
Message from TMA President, Sandy Siegel
My wife, Pauline, will recognize a very difficult anniversary in July 2014; she will have had her inflammatory attack from transverse myelitis 20 years ago. The year 2014 also represents the 20th anniversary of The Transverse Myelitis Association. Pauline’s and the TMA’s anniversaries are inextricably bound. I wrote about these very personal anniversaries in my editor’s column in this past winter’s newsletter. The goals and the programs of our Association have been accelerated and intensified over the past couple of years through the efforts of a growing and focused professional staff, a more engaged board and through the energies offered by a highly motivated and dedicated volunteer community. From research, to the development of new specialists and new centers of excellence, to improved medical education and clinical care, to community education programs, to support networks to quality of life camps, the work of the TMA continues to expand, reaching larger and larger numbers of our membership both nationally and globally.
Our 20-year anniversary is focused on expanding our resources by expanding the participation of our members. The numbers of our membership are just too small for anyone to ignore this effort. Everyone needs to get involved. Your willingness to engage your friends and families in this campaign will make all of the difference for us and for you. These are the people who most intimately understand how having ADEM, TM or NMO has impacted your life and your family’s lives. It is time for us to change the world and to heal the world for those people and their loved ones who suffer with these rare and devastating neuro-immune disorders.
Please invest in research and the future of the TMA by joining the campaign.
- Sandy Siegel, PhD
For more about the TMA – www.myelitis.org