Subject: [INTERNAF] NAF PUBLICATION LIST Date: Sat, 05 Apr 1997 09:46:56 -0400 From: Pam Bower To: INTERNAF@connect.org.uk, Shy-Drager@ctrvax.Vanderbilt.Edu NAF PUBLICATION LIST Following is a list of information available through the National Ataxia Foundation FACT SHEETS & BROCHURES Ataxia Describes ataxia as a symptom (lack of coordination) and its association with other medical problems as well as the hereditary types. Ataxia-telangiectasia Defines A-T, symptoms, associated potential complications, genetic pattern, etc. Essential Tremor Published by NIH, describes this hereditary neurological disorder. Financial Planning Gives potential resources available and discusses financial concerns Frenkel's Exercises Describes an exercise program designed for those with ataxia. Consult your physician first. Friedreich's Ataxia (FA) Describes symptoms, diagnosis, genetics, and hints on coping. Gary Morris Fact Sheet Talks about NAF's National Spokesperson's involvement with NAF and his personal experience with ataxia. Gene Testing for Ataxia Describes the latest information about who should consider it and where to have it done. Health Insurance Provides information about health insurance policies and government assistance. Hereditary Ataxia Brochure Includes general information about the dominant and recessive ataxias and NAF. Hereditary Ataxia: The Facts Briefly describes the characteristics of recessive and dominant forms and NAF goals. (Ideal for mass distribution.) Hereditary Olivopontocerebellar Atrophy (OPCA) Describes testing for, genetics, symptoms of this dominantly inherited type of ataxia. Lists other names also commonly used. Memorial Donations Envelope Envelope that explains remembering a loved one or honoring someone special. Million Dollars for Research Brochure describes NAF's goal to raise $1,000,000 for ataxia research and how you can help. NAF Ambassador Program Describes how anyone can apply to be an Ambassador in their community, what is involved, expectations, etc. NAF Membership A convenient membership envelope that lists the different membership categories. (Members automatically receive quarterly newsletter.) Pen Pal Membership Information on joining NAF's Pen Pals which offers an opportunity to correspond with others in a similar situation. Pen-Pal Directory A directory of NAF Pen Pals, by state, nationally and by country, internationally. Available only to Pen Pal members. Regional Neurological Resources Regional (USA only) lists of neurologists specializing in ataxia diagnosis and management. Sporadic Olivopontocerebellar Atrophy Describes OPCA with no known family history, symptoms and diagnosis. Students with Friedreich's Ataxia Information for parents, teachers, and others who need to understand the physical limitations of students with FA in the classroom. BOOKS AND BOOKLETS "Ten Years to Live" by Henry Schut The story of the Schut family's struggle with hereditary ataxia and the impact it had on this extended family. Paperback; photos. Cost $8.75 which includes S&H. "Hereditary Ataxia: A Guidebook for Managing Speech and Swallowing Problems" Written in 1982 but still helpful as it describes problems, exercises, & suggestions. Cost is $3.50 which includes shipping and handling. QUARTERLY NEWSLETTER "Generations" is a 40 page newsletter published 3 to 4 times per year. Includes research updates, NAF news, chapter and support group contacts and personal stories of living with ataxia. Single copies free. Mailed automatically to NAF members. VIDEO "Together...There is Hope" A 28 minute VHS tape that discusses the ataxias, genetic patterns of inheritance and the National Ataxia Foundation. Cost is $20.00 per tape which includes shipping and handling. -- If there is a charge, please enclose cheque or money order along with your name and return to: National Ataxia Foundation 1500 Wayzata Blvd. #750 Wayzata, MN 55391 Phone: 612-473-7666 Fax: 612-473-9289 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Pam Bower InterNAF co-manager Halifax, Nova Scotia Canada "Home is not where you live, but where they understand you." Christian Morgenstern