Generations articles from June 1997

Generations archives from June 1997

INTERNATIONAL SYMPOSIUM ON INHERITED ATAXIAS.
June 22, 1997... Montreal - May 29 - June 1, 1997 Summary by Martha Nance, MD Over 100 ataxia researchers, clinical specialists, and neurology trainees met in Montreal, Canada, from May 29 - June 1, 1997, for an International Symposium on Inherited...

Issues Regarding Drug Trials in Friedreich's Ataxia.
June 22, 1997... All the exciting new findings regarding the frataxin gene and protein have raised hopes that rational therapy for FA may become possible. The clinicians and research groups are as excited about this as the patients and the families. A sense...

Machado Joseph Disease.
June 22, 1997... Machado Joseph Disease (MJD)is a form of autosomal dominant ataxia. The historical "story" of MJD began in 1972, when a scientific paper was published that described a Portuguese immigrant family in Massachusetts named, Machado. At the time...

"Clinical Management of FA".
June 22, 1997... I am going to begin by mentioning a few things that are important in the management of Friedreich's ataxia (FA). When I say the management, I am talking about the day to day problems that you have to deal with. When you think of management...

"Clinical Applications of Genetic Testing".
June 22, 1997... The top five reasons to have genetic testing for ataxia are: Diagnostic, Predictive, Pre-natal, Carrier testing, and Research." 1. Diagnostic Testing: The most obvious reason to have a gene test is if you have ataxia but you don't know...

"Drug Trial Update".
June 22, 1997... Friedreich's ataxia (FA) was first described in 1861 by Dr. Friedreich. In 1863, six patients in two families were described--the term hereditary ataxia was used. Friedreich's ataxia is one of the most common hereditary ataxias. Patients with...

NAF Position Statement About Iron and Friedreich's Ataxia.
June 22, 1997... A recent scientific report has raised the possibility that accumulation of iron inside cells has something to do with the symptoms of Friedreich's ataxia. Because of this report, many patients and families affected by Friedreich's ataxia are...

DAYS OF SUNSHINE.
June 22, 1997... To walk along the beach, Feel sand between my toes. Ride the merry-go-round, And hear the music flow. Rowing a row boat, Across the glassy lake. Toasting marshmallows, Over embers to taste. ...

After Four Years ...
June 22, 1997... In 1982, I read a "Dear Abby" column which described a rare disease named Hereditary Ataxia. As I was having balance and incoordination problems, I asked the National Ataxia Foundation for information. Subsequently, I was diagnosed by a...

Panel of Doctors.
June 22, 1997... On Sunday, February 16, 1997, members attending the Annual Meeting were divided into two groups, those interested in Friedreich's Ataxia and those in dominant inherited ataxins and sporadic ataxia. After we heard presentations from all the...

NAF Chapters and Support Groups.
June 22, 1997... This is a list of NAF chapters and support groups. The use of these names, addresses, and phone numbers for any purpose other than requesting information regarding NAF or joining a chapter or support group, is strictly prohibited. We...

MEMORIALS AND IN YOUR HONOR.
June 22, 1997... The National Ataxia Foundation is grateful to those who have made contributions in memory or in honor of their friends and families whose names are listed below. This list reflects contributions made from April 1, 1997 to June 30, 1997. ...

"Chicken Soup for the Soul".
June 22, 1997... Joe Hafner is working with Mark Victor Hansen and Jack Canfield (authors or the New York Times best selling Chicken Soup for the Soul book series) on their latest book. This third book of the series is to be written by, for, and about people...

CORRECTION.
June 22, 1997... In Dr. Louis Ptacek's presentation summary on the subject of "SCA4" on page 24 of the Spring 1997 issue of Generations (in the first column, third paragraph), reads "In the identification of the SCA4 gene, we have now developed a nearly...

Northeast Indiana Cerebellar Ataxia Support Group (NICA) (Map #26).
June 22, 1997... "Sausage or Pepperoni?" and plenty of "uuumm-goods" were heard at the June gathering for those who live in northern Indiana. We are growing together as time passes. There are 21 persons plus 2 from June that have taken a big step just to show...

Southern Central Ontario Ataxia Support Group (Map #2D).
June 22, 1997... "Hello strangers! We're baaaack! We are rather happy to be back too. There is NO place like Ontario. I'm looking forward to have the opportunity to see and talk with all of you again. There will be some new members joining us. We look forward...

Central Indiana Support Group (Map #29).
June 22, 1997... Our group meets every other month; January 1997 was an exception because of bad weather. We met in March and we had two speakers. We welcomed Dr. Martin Farlow, a neurologist from Indiana University Medical Center in Indianapolis, and his...

Carolinas Support Group (Map #41).
June 22, 1997... The Carolina Support Group has just over 30 members, one-third of whom have Friedreich's Ataxia (FA). The other two-thirds are mostly dominant/sporadic, with a few cases of spastic paresis, and episodic ataxia. Most of our members live in...

San Fernando Ataxia Support Group (Map #18).
June 22, 1997... Our June meeting speaker was Nancy Sedat who spoke on the topic "Swallowing". She is a Senior Speech Pathologist at the UCLA Speech Pathology Clinic and had useful information about swallowing and useful do's and don'ts to help us compensate...

The Birmingham, Alabama Ataxia Support Group (Map #14).
June 22, 1997... The Alabama Ataxia Group met in Gatlinburg, Tennessee Memorial Day weekend, May 23-25, 1997. Those who ventured the trip and braved the masses were Fred and Becky Donnelly, Pat, Sarah and Jackie Guercio, John and Denise Higdon, Tom and...

Ohio Ataxia Support Group (Map #40).
June 22, 1997... Hi everyone! Summer is finally here. On Sunday, June 8 our support group held a picnic at Mosquito Lake Park. Jennifer and John Underwood and Bill, Ceceila and Bill Urbanskis, Jr. and Joe Miller attended. We were expecting new members to...

Chesapeake Chapter Support Group (Map #3).
June 22, 1997... In between planning sessions for our hosting of the National Membership Meeting next March in Alexandria, VA. (see separate announcement), the Chesapeake Chapter has held two "bi-monthly" meetings. Additionally, we are happy to report that...

San Diego Ataxia Support Group (Map #21).
June 22, 1997... The San Diego group last met for their Support Group Family Barbecue on July 12. May's guest speaker talked about emergency preparedness. One of her hints was when preparing your supply kits, plan on a three-day supply (don't forget your...

THE 1998 NAF MEMBERSHIP MEETING.
June 22, 1997... It may only be the Summer of '97, but it's already time to mark your calendar for the Spring of '98! That's right, start making plans now for the National Ataxia Foundation's 41st Annual Membership Meeting, March 27-29 1998. Join your fellow...

Search For Information On Rare Disease Leads To Marriage Plans.
June 22, 1997... Michelle Schubert, Sydney, Australia, and Michael Fernandes, Oakley, California, are two examples of how cyberspace romance can result in a happy ending or beginning. Mike and Michelle "cyber-met" last September through INTERNAF, the...

At Least I Don't Have Bubonic Plague.
June 22, 1997... Greetings fellow stumblers. My name is Jonas, and I guess you can call me the new kid on the block. I'm 41, and most of my life I just thought my family was unusually clumsy. My father is Lithuanian, and my mom, (the affected side) comes...

Southeast Pennsylvania Support Group (Map #28).
June 22, 1997... We are approaching our first year anniversary, and have evolved into a very active group. Our meeting in June was hosted by Michele, our 4-legged member, who demonstrated how she aids her master, Donna. We were amazed how she maneuvered her...