Generations articles from September 2004

Generations archives from September 2004

Update on spinocerebellar Type 3/Machado Joseph Disease.(National Ataxia Foundation annual membership meeting)
September 22, 2004... The following was presented at the 2004 NAF Annual Membership Meeting. The last year has been a good year for this form of ataxia, which may be the most common dominantly inherited ataxia. In the past year, the disease protein causing...

A novel transgenic model for dominant cerebellar ataxia.(www.ucihs.uci.edu/pandb/chandy/chandy.htm)
September 22, 2004... The following research was funded by the National Ataxia Foundation. Cerebellar ataxia is a lethal neurological disease characterized by incoordination, instability of posture, gait abnormalities, and intention tremor and problems with...

Bad gene.(genetic aspects of Machado Joseph Disease)
September 22, 2004... We were not the typical African-American family; we grew up with Machado-Joseph Disease (MJD) all around us. MJD has been in our family for generations but it was not until the year 2002 that I discovered the name of this strange disease. ...

Interested in earning more interest.(charitable gift annuities)(Brief article)
September 22, 2004... NAF can help! If your money is stuck in a CD or money market account, you are probably receiving interest rates between 2.5% and less than 1%. You have worked hard for your money and you deserve a higher return. May we suggest charitable gift...

Regulation of ataxin-1 cellular localization and degradation.
September 22, 2004... The following research was funded by the National Ataxia Foundation. Summary Spinocerebellar ataxia type 1 (SCA1) is an autosomal dominant neurodegenerative disorder caused by the expansion of a glutamine repeat within the...

NAF Annual Ataxia Research Drive.(National Ataxia Foundation)(Brief article)
September 22, 2004... The National Ataxia Foundation Annual Ataxia Research Drive begins in October of this year. You should be receiving a letter shortly asking for your support in this most important drive. Please give as generously as you can. Over the...

Employer matching gifts program.
September 22, 2004... There are many companies that will match the gift you make to the National Ataxia Foundation. Ask your employer if they have a matching gifts program. If they do, your gift will double in value. NAF receives matching gifts from companies...

Recent advances in the understanding of ARSACS.(autosomal recessive spastic ataxia)
September 22, 2004... The following research was funded by the National Ataxia Foundation. ARSACS is a form of early onset ataxia with spasticity that was originally described in the Charlevoix-Saguenay region of Quebec in Canada. In the late 1970's Dr....

Wheelchair warrior.(Christo Neophytou's holiday complex for the disabled)
September 22, 2004... If you phone Christo Neophytou, don't be put off by the fact he sounds like a full blown drunk--he is in fact as sober as the proverbial judge. Chris's slurred speech is a symptom of Friedreich's ataxia, a disease that attacks the...

NAF's new patient services director.(National Ataxia Foundation)(Brief article)
September 22, 2004... The National Ataxia Foundation is pleased to announce that Becky Kowalkowski is NAF's new Patient Services Director. Becky began her new position with the Foundation on July 20, 2004. Becky has extensive experience in both the nonprofit...

Americans with Disabilities Act: Part 3 in a series.(www.ada.gov/t2hlt95.htm)(www.ada.gov.)
September 22, 2004... The Americans with Disabilities Act (ADA) became federal law in 1992. The third in a series of articles about the ADA (previous ones appeared in spring and summer 2004) this one focuses on Title II of the Act that deals with Public...

Chemical genetic approaches to SCA1 and SCA3.(spinocerebellar ataxia)(Brief article)
September 22, 2004... The following research was funded by the National Ataxia Foundation. The spinocerebellar ataxias are caused by mutations that result in multiple insertions of the amino acid glutamine (polyQ) into specific proteins. When genes having...

Giving options.
September 22, 2004... We encourage you to help support the important work of the National Ataxia Foundation. Here are just a few ways you can help: * Combined Federal Campaign (CFC) Giving (NAF's CFC number is 1028) * United Way--Designate your United Way...

The National Ataxia Foundation 2005 Annual Membership Meeting Ray of Hope: to be held in Tampa, Florida-March 6-9, 2004.
September 22, 2004... It's never too early to begin making plans to attend the 2005 Annual Membership Meeting of the National Ataxia Foundation. The Foundation's Annual Membership Meeting will be held in Tampa, FL March 3-6, 2005. The theme for this meeting--"Ray...

Meet the National Ataxia Foundation's Board of Directors.(Brief article)
September 22, 2004... The NAF's Board of Directors are volunteers who dedicate countless hours in helping ataxia families. The Board is responsible for providing direction and overseeing the operations of the Foundation. The Board also reviews ataxia research...

Featured Board Member of the National Ataxia Foundation: Charlene Danielson.(Brief article)
September 22, 2004... Charlene (Char) Danielson, the eldest of eight children, was born and raised in western Minnesota. Char currently lives in Minnetonka, MN with her husband, Roland, and son, Jeff. She is employed by Tennant Sales and Service in Accounts...

There is hope in Physical Therapy.(Brief article)
September 22, 2004... October 27, 2003, was my first day in Physical Therapy. I was so impressed by the great motivation of my therapists. I never met anyone that had more motivation than me. I was diagnosed with Friedreich's ataxia in 1977. They believe in...

Lucky woman.(ataxia and life's blessings)
September 22, 2004... Recently, I read the book "Lucky Man" by Michael J. Fox. This book inspired me to give serious thought to the many "blessings" life with ataxia has given me. It has made me realize that I, too, really am lucky. Nothing is gained by dwelling...

An invitation from the Tampa Bay Ataxia Support Group to the NAF 2005 Annual Membership Meeting.
September 22, 2004... The Tampa Bay Ataxia Support Group invites you to the Sunshine State March 3-6, 2005, for a "Ray of Hope," the National Ataxia Foundation's 2005 Annual Membership Meeting. This will be the first ever NAF Annual Membership Meeting (AMM) in...

International Ataxia Awareness Day.
September 22, 2004... Many National Ataxia Foundation members were busy participating in International Ataxia Awareness Day (IAAD) on September 25th. Some contacted local political representatives, planned awareness ceremonies, set up awareness booths, and others...

A genetic model of FRDA in Drosophila.(Friedreich's ataxia)
September 22, 2004... The following research was funded by the National Ataxia Foundation. Summary This report summarizes the findings from our work aimed at generating a genetic model of FRDA in the model organism, Drosophila. We believe that a better...

Chair Party.(poem)(Poem)
September 22, 2004... Didn't matter what time of day it was--April or December, Stories that I'm fixin' to tell you are things I distinctly remember. I'd do lots of things when I was younger--I thought life was pretty great, But...

Maine area Ataxia Support Group.(picnics)(Brief article)
September 22, 2004... The Maine Ataxia support held a picnic on July 10th at the Casco Bay YMCA in South Freeport. The weather on that day was unpredictable so we set up to eat inside, while cooking outside on the grill. It was great to see everyone and their...

Los Angeles Ataxia Support Group.(Brief article)(Conference notes)
September 22, 2004... On Saturday, July 10th the Los Angeles Ataxia Support group held its annual picnic at Woodley Ave. Park. It was a beautiful day and all that attended had a wonderful time sharing great food and fellowship. On September 11 at the regular...

Denver area Ataxia Support Group.(Colorado Ataxia Support Group)(Brief article)(Conference notes)
September 22, 2004... The Colorado Ataxia Support Group had two guest speakers at ASG's summer meeting June 12th. They were Dr. Anne Reynolds, a pediatrician, and Ms. Cathlin Rice, a genetic counselor. The guests were from the University of Colorado's Health...

Howard County Ataxia Support Group.(Brief article)(Conference notes)
September 22, 2004... Eighteen people came to our regular meeting June 5 at Lorien Nursing Home in Columbia, MD. Our speakers were Dr. Russell Margolis and Dr. Sarah Yang, both from John's Hopkins Hospital. Dr Sarah Yang spoke first about the need (absolute...

The Howard County Ataxia Support Group (HCASG) met on Saturday, August 7.(Brief article)(Conference notes)
September 22, 2004... The Howard County Ataxia Support Group (HCASG) met on Saturday, August 7. Twenty members came to hear a presentation and participate in a brainstorming session led by guest speaker Anne Ball. Anne has an impressive background in journalism...

Greater Atlanta Ataxia Support Group.(Conference notes)
September 22, 2004... The Greater Atlanta Ataxia Support Group met at the Emory Center for Rehabilitation Medicine on July 10 at 1:00 p.m. There were 23 members in attendance including 10 new members. In addition to the new members in attendance, six other members...

Chesapeake Chapter.(Conference notes)
September 22, 2004... Advocacy Forum of the Asent Meeting The Chesapeake Chapter is fortunate in its location amongst some of the top national medical research centers, as the National Institutes of Health and the U.S. Naval Medical Research Institute in...

Northern California Ataxia Support Group.(Conference notes)
September 22, 2004... Twenty-four people including one "first-timer" attended the July 10 quarterly meeting of the Northern California Ataxia Support Group (NCASG). We did not have a guest speaker so we had more time to discuss future plans for our group. We...

Tampa Bay Ataxia Support Group.(Conference notes)
September 22, 2004... While the Tampa Bay Ataxia Support Group does not have scheduled meetings during the summer, members did meet a couple of times for special get-togethers. First, on June 17 and 18 members met at the University of South Florida School of...

Attention Chapter and Support Group leaders.
September 22, 2004... Please remember to send in your Chapter and Support Group news articles! It helps others know what is happening in their area and inspires them to get involved! The deadline for the winter issue of Generations is November 5th. Send your...

St. Louis, MO Support Group.(Metro Ataxia Support Group)(Brief article)(Conference notes)
September 22, 2004... On a cool and overcast August 29th, the St. Louis Metro Ataxia Support Group held their Annual Picnic at Horseshoe Lake State Park near Collinsville, IL, with 34 members and guests attending. The picnic hosts, Elaine and Bill Darte along with...

Appointment.(Poem)(Brief article)
September 22, 2004... Appointment It's 5 A.M., I'm still in bed, Coffee grinder ringing in my head Mom gets me up, And helps me about, Two hours later, We're out of the house. To the hospital is, An hour's drive,...

NAF chapters and support groups.(National Ataxia Foundation)(Directory)
September 22, 2004... 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 encourage...

Ambassador listing.(Directory)
September 22, 2004... The following is a list of NAF Ambassadors. Ambassadors are often in areas not served by a support group or chapter. Please get to know your Ambassadors, and if you would like to become an Ambassador please contact the NAF office for an...

Calendar of events.(Calendar)
September 22, 2004... October 2 North Texas Ataxia S.G. Meeting, 10 am-12 pm at Los Colinas Medical Center 9 Tampa Bay, FL S.G. Meeting. Contact Nygel Lenz for meeting time and location. 9 Northern California Ataxia S.G. Meeting...

Memorials and in your honor.
September 22, 2004... 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 May through August 2004. We are sorry...