The only thing I have to add is that if anyone has an awareness group let me know and I can add it to the page at http://www.myelitis.org/support.htm
At 09:22 AM 6/15/2009, Deborah Nord Capen wrote:
I have to respectfully add to Grace's comment below. She is absolutely correct when she states that the groups are formed to spread awareness of TM, ADEM, NMO and the other neuroimmunologic disorders. The TMA was not formed to hold a monopoly on support groups. It was formed as a non-profit organization to enable us to raise funding for research into causes and cures, form a Medical Advisory Board of excellent physicians who support our cause, raise awareness around the world, and help facilitate emotional support for those who have these disorders. Without the ability to raise money which is tax deductible for our contributors, none of this would have happened. Without the non-profit status, we can not request grants or funding from the NIH, NINDS or other groups for research support.
We applaud all those individuals who start the support groups both online and in their geographic areas, as without their help, transverse myelitis does not have a "face". Pretty much all of these groups have been started by TMA members. Jim Lubin was our pioneer into this medium. He started the first Internet support group when he became a vent-dependent quadriplegic from TM. He also started many other support groups, such as the vent-dependent quad list.
We will never have enough support groups. I myself have joined several of these groups just to see the sharing and emotional support that goes on. It is very heart-warming to see this happening.
I think that having all of the support groups makes us more noticeable to the news media and the talk shows. I don't think that any of these shows ever mentioned TM prior to 1997. This awareness has happened because those of us with TM are not just sitting quietly and let it consume our lives. We are doing something about it!
Also, in my opinion, I don't think that there is any bickering going on about this topic; I think it is just productive conversation and helps to make all the newer subscribers aware that these lists are all out there for their information, and let's not forget our caregivers. They need support groups too!
Take care,
Debbie Capen
Secretary
The Transverse Myelitis Association
- ----- Original Message -----
- From: Grace M.
- To: jharpe...@aol.com
- Cc: rp...@neillsupply.com ; jlu...@makoa.org ; tmic-list@eskimo.com
- Sent: Monday, June 15, 2009 9:00 AM
- Subject: Re: [TMIC] Transverse Myelitis Network
- The Transverse Myelitis Network is another great way for patients to communicate and compare notes. Many of the TMIC members participate there. Our own Marieke is one of the administrators. I advocate for NMO, and work with Sandy Siegel and the TMA crew, and I also have my own site, of which Mr. Siegel is extremely supportive. It's all about spreading awareness of issues like TM, and other causes of non traumatic SCI. There is enough room for everyone an no need to quibble.
- Respectfully,
- Grace
Jim Lubin
jlu...@eskimo.com
http://makoa.org/jim
disAbility Resources: http://www.makoa.org
