My reply from ORD

Rizahdough(AT)aol.com
Mon, 5 Oct 1998 16:05:11 EDT

Hello Everyone,
I just wanted to show you what I recieved when I replied to Paula Jones, at
ORD. She had replied to my original mail, (when I asked why TM was not on
their list). She had asked for personal information of mine and I did not
feel comfortable sending it, at that time. She had written in her original
mail to me, that she would answer any questions I had. I was hoping we could
continue thru email. My reply to her original mail and her reply back to me
is below. Seems that the illustrious TMA has been noticed.
Now, I do realize that I may have gotten a "brush off"...........but I accept
it knowing it was to TMA and this list! I will let Paula Jones know, I am a
member. Smiling here as usual, what a small world.

Kris~

-----Original Message-----
From: Rizahdough(AT)aol.com [SMTP:Rizahdough(AT)aol.com]
Sent: Wednesday, September 30, 1998 5:08 PM
To: Jones, Paula (OD)
Subject: Re: Office of Rare Diseases Request/ transverse
myelitis

Hi Paula,
I thank you for your reply to my concern regarding Transverse
Myelitis not
being on your list of rare diseases. You asked for my address and
telephone
number, but I don't send personal information over the internet,
especially
and most assuredly when I don't know who I am sending it to. (no
offense)
I was scanning the ORD web site for TM, as I was diagnosed with
that disease
39 years ago. It is not a new disease, so I wonder why there is hardly
any
information on it.
Anyway, I would love to comminicate with you, if we can do it thru
e-mail. I
find it the quickest way of communication.
Thank you for your time and your understanding on this matter.

Sincerely,
Kris~

This was the reply I got:

You may be interested in the following information from the National
Organization of Rare Diseases (NORD).

Transverse Myelitis Association

**IMPORTANT**
The information contained in the Organizational Database (ODB) is provided for
informational
purposes only. There is no implied endorsement by NORD. NORD does not promote
or
endorse
participation in any specific organization. The information is subject to
change
without notice. Every
effort is made to ensure that the details for each entry are as current as
possible.

Address:
3548 Tahoma Place West
Tacoma WA 98466-2142

Phone: (253) 565-8156
e-mail: ssiegel(AT)myelitis.org
Acronym: TMA
Users: Patients/Family Members. General Public. Health Professionals.
Keywords:
Adults; Females; Males; Not For Profit; Patient Advocacy; Professional
Education; Rare Disorder
Organization; Referrals; Reports; Self-Help Organization; Support Groups;
Transverse Myelitis;
Wichita State University, 1845 Fairmount, Wichita, KS 67260-0034;
Year Established: 1994
Members: N/A
Chapters: None.
Description:
The Transverse Myelitis Association (TMA) is a not-for-profit self-help
organization dedicated to
providing mutual support to families affected by transverse myelitis.
Transverse
myelitis is an acute
spinal cord inflammation involving both sides of the spinal cord. Established
in
1994, the Transverse
Myelitis Association enables affected families to exchange information,
support,
and resources;
engages in patient advocacy; provides a pen pal service; conducts group
meetings; and offers phone
support. The Association also offers appropriate referrals; engages in patient
and professional
education; and serves as a clearinghouse of information on transverse
myelitis,
offering a variety of
reports and brochures.
World Wide Web Address: http://www.myelitis.org