The inaugural Transverse Myelitis Awareness Day in Australia was held on May 12, 1999. Ian Hawkins is the Facilitator of the Transverse Myelitis Support Group. Those in attendance at the meeting heard a presentation from Clare Dean, a Physiotherapist from the Princess Alexandra Hospital's Spinal Injuries Unit. She spoke to the group about TM and she also answered questions. There was a lunch for the group following the presentation. The Australian Transverse Myelitis Awareness Day is an important step for those in Australia who have this condition. The Transverse Myelitis Support Group is planning their next Transverse Myelitis Awareness Day for May of 2000. If you are a TMA member from Australia, or if you are a TMA member and just happen to be in the neighborhood, we encourage you to contact Ian Hawkins.

Ian Hawkins, Facilitator of the Transverse Myelitis Support Group
PO Box 5651 West End
Queensland 4101
Australia
(07) 3206 4618
PQAQ[AT SIGN]GIL.COM.AU

I would like to offer a summary and some comments, including my personal involvement, and observations about the TM Awareness Day. I would also like to present an outline of procedural steps necessary to obtain a proclamation/resolution for Transverse Myelitis Awareness Day to those TMA members who wish to do so in their respective states.

Because the disease has had such a profound and devastating impact on my life, I decided to gather support and build awareness for Transverse Myelitis. As a long-time political activist in my community and vice president of the local political club, I have become acquainted and worked on campaigns for several candidates who later were elected to the New York State Legislature. This entry paved the way for me to lobby my local assemblyman, Brian McLaughlin (D-Flushing) to sponsor a Transverse Myelitis Awareness Day in the legislature.

I had the good fortune to renew my acquaintenship with Assemblyman McLaughlin at a local event, where I was exhibiting literature and information about drugs and alcohol in my capacity as Outreach Manager for Citizens Against Substance Abuse, a local volunteer community anti-drug organization. I spoke to him about sponsoring the resolution and he agreed to discuss it further. He suggested that I send him information about Transverse Myelitis. I contacted Deanne Gilmur, as President of The Transverse Myelitis Association, to write a cover letter to Assemblyman McLaughlin requesting his help in sponsoring the resolution. Later, I had several conversations with his staff members regarding the date of the proposed resolution and any additional information I could give them to help craft the language of the resolution.

On March 3, 1999, I received a letter from Assemblyman McLaughlin telling me that the resolution proclaiming June 6, 1999 "Transverse Myelitis Awareness Day" was passed unanimously in both houses of the State Legislature. From that time on, I wanted to plan a ceremony and luncheon support meeting to commemorate that important date. I decided to invite other TM members in New York State. The response I received from these invitations was very gratifying and we had twenty-five attendees, including TM members with their friends and families.

The event proceeded along these lines. There was a short ceremony acknowledging and thanking Assemblyman McLaughlin and his staff for their efforts in sponsoring and the passage of the resolution. There was a reading of the resolution by a staff member of Assemblyman McLaughlin's office and a briefing by her explaining that his office was a possible funding source for the organization and suggested we write a proposal for grant money. We shared our individual experiences and struggles with this disease and how we cope with it on a daily basis. Further discussions included various drug treatments, the benefits of physical therapy and referrals for doctors for those who wanted further consultations. Literature about Transverse Myelitis was made available for everyone on a special table set up for that purpose. I had obtained the copies from my local library using their computer printouts. There were also copies of The Transverse Myelitis Association brochure.

Judging by the favorable comments of the attendees, I considered the luncheon a resounding success. They repeatedly stated that this luncheon support meeting was the first time they were able to meet others with the same condition as themselves. As suggested by the attendees, I mailed each one a copy of the attendance record complete with addresses and telephone numbers. Because of the satisfactory reception of this event, I scheduled another meeting for October 1999.

For those members who wish to obtain a proclamation/resolution for "Transverse Myelitis Awareness Day" in their respective states, there are several methods you can use to accomplish this. There is an informal and a formal procedure that is acceptable. The formal procedure involves the following steps. You must petition the state legislature to pass the resolution by submitting the petition with as many signatures as you can gather from various sources, such as churches, business organizations, friends, family and even door-to-door canvassing. When you head up the petition, you might use the following as an example. Begin by stating, We the undersigned petition the state legislature to pass a resolution declaring (members must choose a date prior to writing the petition to be inserted here) as "Transverse Myelitis Awareness Day." At this point in the petition, I suggest you describe what TM is using as a guide, the text from the TMA brochure headed, "What is Transverse Myelitis." The reason for doing this is because people want to know what they are signing. Compose a cover letter incorporating the symptoms, the pathology of Transverse Myelitis and certain data, such as who gets TM, the incidence rate and so forth. The letter can be written on the letterhead of the TMA and signed by Deanne Gilmur, President, if you feel it will carry more clout with the legislature. I would also include a copy of the resolution I obtained from the New York State Legislature as a further guide in crafting the language of the resolution.

Next, submit a cover letter, petition, a copy of the resolution to the state officials who are members of the state legislature in your district, as well as to four or five other state legislators in other parts of the state outside of your district. At the bottom of the cover letter, please indicate the names of the state officials who have received the same information.

The other method would be to appeal directly to your local state-elected official. Send him or her a copy of the resolution, cover letter and some literature about Transverse Myelitis. The article written by Dr. Levy and Dr. Lynn of our Medical Advisory Board would work well for this purpose, and can be printed from the TMA web site. Then follow up with a call to ask for an appointment to meet with him or her or a member of his or her staff. When the interview has been arranged, I suggest you bring copies of the same material you previously sent to him or her and copies of current newsletters of the TMA.

The two options I discussed in obtaining the resolution for "Transverse Myelitis Awareness Day" provide a useful guide in reaching that goal. However, any valid modification of your own can be used to obtain the same result.

As a format and with some appropriate modifications, the copy of the letter Deanne wrote to Assemblyman McLaughlin would be a good example for the cover letter. A copy of this letter is available on the TMA web site. A copy of the New York Resolution is included in the newsletter for your information and to assist you in your efforts. Best of luck to all of you.

Pamela Schechter
New York State Representative for The Transverse Myelitis Association

WHEREAS, A disease known as Transverse Myelitis, which adversely affects some 1,250 Americans, is not widely recognized by the medical profession or the general public as being a significant serious spinal cord condition; and

WHEREAS, Transverse Myelitis is a devastating condition that can affect a person in a variety of ways; affecting the neurological system, the spinal cord becomes inflamed which can occur as a single condition or in the presence of an existing illness; and

WHEREAS, Symptoms which can be physically debilitating include back pain, numbness of the lower extremities, and headache; as the condition progresses the eventual outcome is paralysis, sensory loss and bowel and bladder dysfunction; and

WHEREAS, Historically, scientific research has indicated that Transverse Myelitis was an extremely rare condition happening in only one of every million people; more recent findings have indicated that the incidence of this condition has risen nearly four hundred percent; and

WHEREAS, The Transverse Myelitis Association (TMA), a not-for-profit organization, has seen an increase from 180 members in 1997 to over 1,250 in 1998 and the numbers are rapidly increasing; and

WHEREAS, While spinal cord injuries have been well publicized lately in the media, Transverse Myelitis is often overlooked; and

WHEREAS, Recovering from Transverse Myelitis can also be difficult since treatment may take months with no sure guarantee that improvement will occur; only one-third of those inflicted make a full recovery; many medical professionals are unaware of this condition and the needs of patients with Transverse Myelitis; and

WHEREAS, if this condition was more widely recognized, diagnosis and further scientific research would benefit those who suffer from this condition; and

WHEREAS, It is in the interest of the people of the State of New York to seek ways of drawing attention to Transverse Myelitis in order to increase awareness of this little known condition; now, therefore, be it

RESOLVED, That this Legislative Body pause in its deliberations to memorialize Governor George E. Pataki to proclaim June 6, 1999, as Transverse Myelitis Day in the State of New York in order to educate the public, physicians, and other members of the medical community regarding the needs and issues of Transverse Myelitis patients; and be it further

RESOLVED, That copies of this Resolution, suitably engrossed, be transmitted to The Honorable George E. Pataki, Governor of the State of New York, and to Deanne Gilmur, the President and Founder of the Transverse Myelitis Association; TMA Vice President Sanford J. Siegel; Paula Lazzeri; Deborah Capen; Jim Lubin; and Pamela Schechter.

RESOLEG
Short Title: Memorializing the Governor to proclaim June 6, 1999, as Transverse Myelitis Day in the State of New York