Generations articles from June 2009

Generations archives from June 2009

Ataxia research review.
June 22, 2009... The following was presented at the 2009 NAF Annual Membership Meeting in Seattle, WA and edited for publication in Generations. Over the years we've talked about research in ataxia as consisting of three major areas. The first area being the...

Episodic ataxia patient registry.
June 22, 2009... The episodic ataxias are characterized by attacks of clumsiness and imbalance, often triggered by factors such as stress or fatigue. Episodic ataxia type 1 is characterized by episodes of imbalance with fine twitching or rippling of muscles,...

Cognition, emotion and the cerebellum.
June 22, 2009... The following was presented at the 2008 NAF Annual Membership Meeting in Las Vegas, NV and edited for publication in Generations. We're going to talk about a topic that is somewhat new in the ataxia world, new to doctors but not new to...

Emergency evacuation guide.
June 22, 2009... According to the National Fire Protection Association (NFPA) publication Emergency Evacuation Planning Guide for People with Disabilities, "All people, regardless of circumstances, have some obligation to be prepared to take action during an...

Update on the Ataxia Center at Johns Hopkins Medical Institute.
June 22, 2009... In February of 2008, the inauguration of the Ataxia Center at Johns Hopkins Medical Institute in Baltimore was announced at the Chesapeake Chapter's Annual Medical Meeting. In August of 2008 Joseph M. Savitt, MD, PhD of the Johns Hopkins...

International Ataxia Awareness Day: September 25, 2009.
June 22, 2009... International Ataxia Awareness Day (IAAD) is celebrated around the world every year on September 25 to spread the word about ataxia and to raise awareness about the effects of ataxia. There are many ways you can participate in IAAD. NAF has...

Ironman for Ataxia.
June 22, 2009... On September 13, 2009 National Ataxia Foundation member Joe Golminas will participate in the Madison Wisconsin Ironman competition an event that pushes the boundaries of athletic endurance through a 2.4-mile swim, 112-mile bike, and a 26.2-mile...

NAF needs your help.
June 22, 2009... In these uncertain economic times, the National Ataxia Foundation more than ever appreciates your commitment and financial sacrifice in supporting the important work of the Foundation. Here are just a few ways in which you can help further the...

Carl J. Lauter--Chesapeake Chapter's President Emeritus.
June 22, 2009... After 14 years of dedicated service as President of the Chesapeake Chapter of the National Ataxia Foundation, Carl J. Lauter became President Emeritus on April 26 at a meeting of the Chapter's "A-Team." Much has been accomplished under his...

Request for research proposals.
June 22, 2009... The National Ataxia Foundation (NAF) is requesting research proposals focusing on new and innovative studies that are relevant to the cause, pathogenesis or treatment of ataxia, both hereditary and sporadic. The National Ataxia Foundation was...

Chesapeake Chapter medical meeting: full of hope and optimism.(Conference news)
June 22, 2009... The annual medical meeting of the Chesapeake Chapter of NAF was held Saturday, February 21, at Montgomery College in Rockville, MD, with A/V help ably provided by Philip d'Souza of the college. About 140 people were in attendance, including...

My Body / My Mind.(Poem)
June 22, 2009... My Body/My Mind My body has a mind Of its own For if it used the mind It was given. All things would work Together for Good... Unfortunately, my body Has decided to go Its own way Forget synchronization ...

American Association on Health and Disability (AAHD) Scholarship Program applications now being taken.
June 22, 2009... In 2009, the American Association on Health and Disability (AAHD) created the AAHD Scholarship Program, which will support students with disabilities who are pursuing higher education. Preference will be given to students who plan to pursue...

Dr. Susan Perlman appointed as medical director of NAF.(National Ataxia Foundation )(Brief article)
June 22, 2009... Susan L. Perlman, MD has been the Director of the Ataxia Center and Huntington's Disease Center of Excellence at UCLA since 1983. During her career she has provided excellent care for hundreds of ataxia patients. [ILLUSTRATION OMITTED] Dr....

NAF represented at American Academy of Neurology Meeting.(National Ataxia Foundation )(Brief article)
June 22, 2009... The Seattle Ataxia Support Group supported the National Ataxia Foundation by volunteering at their exhibit booth at the American Academy of Neurology Meeting held at the Washington State Convention Center in downtown Seattle on April 20-23. ...

Incontinence & personal hygiene.(Caregiver's Corner)
June 22, 2009... A Common Little Secret Incontinence is a problem that involves the leakage of urine or feces over which the person has no control. Bladder management medications are available; other possible treatments include bladder training, exercises to...

From the desk of the executive director.
June 22, 2009... Each of us has an opportunity to make a difference. I see it time and time again by individuals and families who have made a commitment to support the important work of the National Ataxia Foundation. These families and individuals have...

Managing ataxia and managing your neurologist.
June 22, 2009... The following was presented at the 2009 NAF Annual Membership Meeting in Seattle, WA and edited for publication in Generations. Very few physicians know about ataxia. It may take a long time to be diagnosed and there's often a lot of...

Falls & home safety.(Caregiver's Corner)
June 22, 2009... Things You Can Do Falls can occur any time, any place and to anyone while doing everyday activities such as climbing stairs or getting out of the bathtub. Simple safety modifications at home--where 60 percent of seniors' falls occur--can...

Discovering and developing new medications--the long and challenging journey.
June 22, 2009... Developing a new drug for the treatment of human disease is a highly regulated undertaking, requiring years of research and a huge investment of time, money, and people. In the United States, the journey from promising compound to approved drug...

Los Angeles Ataxia Support Group.(Chapter and Support Group News from Around the Country)(Conference news)
June 22, 2009... On May 9, members of the Los Angeles Ataxia Support Group (LAASG) met at the Westside Center for Independent Living. We were happy to welcome Sherry and Randy Dombrouski, who were visiting from Michigan. Group leader Sid Luther reported on...

N.E. Florida Ataxia Support Group.(Chapter and Support Group News from Around the Country)(Conference news)
June 22, 2009... Our group met on May 9 at the Baptist South Medical Center in Jacksonville. We discussed the March NAF Convention in Seattle, the new research group at the University of South Florida and I handed out copies of the book "Ataxia Tactics" by Peter...

Alabama Ataxia Support Group.(Chapter and Support Group News from Around the Country)(Conference news)
June 22, 2009... Our Support Group met on Saturday, April 25, at Covenant Presbyterian Church with 17 members present. We enjoyed a time of greeting, refreshments and fellowship and then had reports from Cell Group leaders who gave updates on those absent. The...

Western Michigan Ataxia Support Group.(Chapter and Support Group News from Around the Country)(Conference news)
June 22, 2009... Our first Support Group meeting was held Saturday, April 12, at the Donnelly Center at Aquinas College. Dr. James Garbern, a neurologist from Wayne State's Medical College, spoke from the heart as he addressed the group of ataxians and their...

West Central Florida Ataxia Support Group.(Chapter and Support Group News from Around the Country)(Conference news)
June 22, 2009... We most recently met at the Feathersound Community Church in Clearwater with 30 members present. After a sub sandwich lunch and some camaraderie we saw a presentation from New Horizon Service Dogs. A service dog is a dog that has been...

Metro area Chicago Ataxia Support Group.(Chapter and Support Group News from Around the Country)(Conference news)
June 22, 2009... At our meeting on April 25 at the Chicago Public Library--Edgewater Branch, Mary Anne Ehlert, founder and CEO of Protected Tomorrows, gave a very thought provoking and interesting presentation, discussing topics like future care planning, and...

Maine Ataxia Support Group.(Chapter and Support Group News from Around the Country)(Conference news)
June 22, 2009... The Maine Ataxia Support Group met April 25 at the Casco Bay Freeport YMCA. This meeting was most requested by our group. We had two speakers for a break-out session. Doreen Stone LMSW-CC and Kate Dulac LCPC were the speakers. We divided into...

Chesapeake chapter news.(Chapter and Support Group News from Around the Country)
June 22, 2009... In March Jenean McKay represented CC-NAF at the annual meeting of ASENT, the American Society for Experimental Neuro-Therapeutics. ASENT was organized to advance the development of improved therapies for diseases and disorders of the nervous...

Detroit Area Ataxia Support Group.(Chapter and Support Group News from Around the Country)(Conference news)
June 22, 2009... On March 28 the Greater Detroit Area Ataxia Support Group had a great meeting--our first meeting of the year after a brief break during the winter. We welcomed several new members, and had two wonderful speakers--Margit Burmeister, PhD,...

'Project: cure'--fighting for a cure through music.(Chapter and Support Group News from Around the Country)(Brief article)
June 22, 2009... Project: Cure is a new collaborative music project that aims to use music to make a difference in the lives of individuals and families facing chronic, life-threatening conditions. The collaborative recently released a compilation CD that is...

Chapters, support groups and ambassadors.(Directory)
June 22, 2009... The following is a list of National Ataxia Foundation chapters, support groups and ambassadors. The use of these names, addresses and phone numbers for any purpose other than requesting information regarding NAF or joining a chapter or support...

Calendar of events.(Calendar)
June 22, 2009... Thursday, June 25, 2009 Abilities Expo--Chicago June 25-27, 2009 at the Schaumburg Convention Center in Chicago, IL. ww.abilitiesexpo.com Saturday, June 27, 2009 Chesapeake Chapter Support Group Meeting 12:30-2:30 p.m. Johns Hopkins...

Memorials and in your honor.
June 22, 2009... 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 March 2009 through April 2009. We are...