Words from The Editor

Internaf Newsletter May 2000 Issue Page 1

-- By Marty Burke
One of the things that I find most necessary for us Ataxians is that we communicate. So often I have found that, for example, things I had thought were unique to me were in fact symptoms shared with many others. Similarly, I don't happen to have diabetes or hearing problems, but many Ataxians do. If you explore the InterNAF site, you will find much information you may find helpful. Likewise, Jamey McLaughlin has set up his "Tricks Of The Trade" website at http://www.roanetnheritage.com/jamey/tricks/tricks.htm where you can find or share whatever you may. If something helps you, it will probably help others too. FA seems to be the most common form of an already rare Ataxia, followed by the various SCA's. My form (PCD) is a rare form of Ataxia - if only 'cuz nearly 90% of us have, or will get, some form of cancer, usually Lung or Ovarian. Most forms have their own sites, so if you'll tell me what they are, I'll try to print them here. The PCD site is easy for me since I am the Webmaster. It's http://pcd.50megs.com /and there's a Friedreich's site at http://www.ninds.nih.gov/patients/Disorder/FATAXIA/friedreichsataxia.HTM

International Ataxia Awareness Day

SEPTEMBER 25th 2000

Whenever I hear people talking or writing about Ataxia, because at present there is no known cure, the phrase “There’s nothing we can do for them” is often used by well meaning friends or relatives. In fact, there are at least two things, which anyone can do to help when a friend or loved one receives a diagnosis of Ataxia:

q Raise cash to help pay for research.
q Raise public awareness of the term Ataxia

There are many varied types of Ataxia; these rare neurological disorders usually have initial symptoms of clumsiness and loss of co-ordination. As the disease progresses, it affects mobility and speech, often leading to total physical dependency. Ataxia is not always genetic in origin, but many forms are, which can have serious implications for families as well as the affected individual. Despite international research efforts, there is at present, no known treatment or cure. An overwhelming sense of isolation often accompanies the diagnosis, with affected individuals believing themselves to be the only person in the world with their condition. To make matters worse, they are often perceived as drunks or mentally ill which is quite ironic, as in the majority of cases, mental functions are not impaired at all. For such reasons, the need to raise public awareness of this condition is paramount.

As with any rare disorder, good support groups are few and far between. There are of course National organisations that co-ordinate fund-raising activities for research and in most cases hold membership meetings on an annual basis only. Many successful independent and local groups do exist. The very nature of local branches, groups and chapters means that they are able to hold more frequent meetings without the need for travel or expensive hotel accommodation. The fact that many affected individuals live far from any others, let alone local groups, means that their isolation is often reinforced by the absence of any regular contact with others in a similar situation.

Through the International Network of Ataxia Friends or Internaf, came the idea for this special day; National and local support groups as well as families and individuals will be invited to hold an Awareness raising event with help and support from existing local or national organisations.

There are many considerations when deciding the nature of such an event, what may be perfectly acceptable in some world communities will be totally unsuitable in others. With rapid advances in molecular genetics research and current drug therapy trials, the hope for effective treatments to become available is greater now than at any time. In the USA for example, a recognised symbol for hope is a lit candle. From this fact, it is hoped that candlelit meetings can take place all over the USA on this day. Photographs of such meetings will provide a basis for articles to be submitted to local and national media, enhancing our main objective – To raise Ataxia Awareness. As other ideas from around the world emerge, photographs with internationally recognised background scenes can be used for the same purpose.

Keith Chesser of the Golden Triangle Support Group in Texas, USA was first to go ahead with the idea, and made local news when his local Mayor, Joe Hopkins, presented him with a Proclamation for an Ataxia Awareness Day. Arnold Gruetsmacher, a board member of The National Ataxia Foundation in the USA, said “On behalf of Denise Drake, chair of our special events committee, the matter of the Awareness Day was proposed by myself and the board voted to participate and will acknowledge that day. In other words NAF is 100% in favour of the day.” At the 2000 NAF annual conference in Biloxi, MS I was proud to be in attendance at the Banquet when the official USA launch took place. With a candle-lit backdrop and AAD placards standing on every table, supportive and encouraging words from Arnie Gruetsmacher were greeted with enthusiasm from all attendees.

Ernest Heath, Chairman of Ataxia in the UK had this to say, “An Ataxia Awareness Day has a lot of merit. We are certainly keen to take every opportunity to raise our profile here in the UK and the international linkup should be of benefit”

Australasia’s volunteer board member is Jennifer Callaghan from Sydney, Australia who was diagnosed with Friedreich’s Ataxia at 21 who said, “We do hold very successful awareness and fund-raising events already, but an international event should make articles much more attractive to the media”

Mike Beaudet of Canada is our contact with the large French-speaking group, CAFA and is presently in touch with them concerning their participation. Mike said “ Although CAFA are keen to participate, the exact nature of their input has yet to be decided”

Marco Meinders of Euro-Ataxia said “That's a very interesting idea. Personally, I'd think of an event that would generate a lot of media attention”

Internaf Member Rawnie Dunn of British Columbia has developed some Ataxia Awareness web pages containing copyright-free material for use in raising Ataxia awareness, which can be seen by following the AAD link on the Internaf homepage at http://internaf.org

This article will appear in newsletters and on websites around the world, together we can help make the term Ataxia less of a mystery to the public, which in turn should help us to raise funds vital for the progress of research. Please contact your local or national organisation and ask how you can help.

Chris Polhill
International Network of Ataxia Friends.

Life With Chair: Freak City:

A Movie Review

By Sharon Anderson

Written by Jane Shepard, this is the story of Ruth Elison, a young woman
with MS who has been living with her grandmother. When her grandmother dies,
Ruth's relatives commit her to a nursing home. Ruth is, by nature, an angry
young woman with a smart mouth. At first, she deliberately tries to alienate
everyone, and is a pain in the you-know-where. She naturally views the
institution as prison, and tries to escape. She is terrified and appalled
at the other residents, and views everyone on the staff as an enemy to be
thwarted.
The institution, of course, has its own society with its own rules -- only
part of which are created and enforced by the administration. To begin with,
the gimps and the goons have separate tables in the cafeteria. Crossing
boundaries will be punished. Another common thread is that most of the
residents are trying to get Out. Or believe they are getting Out. Or are
trying to convince others that their exit is imminent. Getting Out is more
than just wishful thinking. Getting Out means you still have hope. Ruth has
her own schemes for getting Out. But she doesn't ever quite pull it together
to do so. At one point, she tells a social worker, "I just want to go into a
bar and have a beer...while I can still hold it with my own two hands." But
it is not until she becomes involved in the schemes and dreams of other
residents who are also trying to get Out, that she makes a place for herself
within the institution, and mellows a little bit.
Samantha Mathis, who plays Ruth, is very likable, and very believable. She
is hard as nails when she talks to the medical and administrative staff,
vulnerable when she wants to attract a young man, and determined within her
own mind not to succumb to this disease. But this movie really shines with
its all-star supporting cast. Jonathan Silverman is Lenny, a
seemingly-competent young man who happens to be blind. Estelle Parsons is
Lenny's mother, and his biggest handicap. Marlee Matlin is Cass, the
childlike and exuberant young woman who becomes Ruth's roommate. Natalie Cole
is Eleanor, admitted because an accident left her with a traumatic brain
injury. And Peter Sarsgaard is Cal, the quadriplegic young cynic who woos
Ruth with his tales of Dante and the various hells.
On a scale of five crutches, this one gets a four.

Internaf Newsletter May 2000 Issue Page 1

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