FAPG Homepage-  Introduction and welcome to all parents of children with ataxia

Links- www links about Friedreich's ataxia and disability

Site Map

• Subscribe to FAPG- information on how to subscribe to the parents mailing list 

  • FAPG Posting Guidelines and Policy of Confidentiality 

  • How to Make Changes to your FAPG subscription

• What is Friedreich's Ataxia? -- From www.curefa.org

• Symptoms - Solutions -- Clinical symptoms of FA 

  • Deafness - Hearing Loss in FA 

  • Scoliosis - Links, pictures and a parent's guide to spinal fusion in FA patients 

  • Speech and Swallowing -- also known as dysarthria

• Research -- links to recent research in FA

• We've Learned - Things we have learned about raising children with ataxia, from the FAPG list 

  • Coping 

    • For Parents - Coping With Stress; ideas from FA Parents 

      • New Parents -- Guide for parents with a new diagnosis

    • For Children - Book review, Young People and Chronic Illness: Stories, Help and Hope by Kelly Huegel        

      • Books About Physical Disability for Kids 

  • Daily Living - Practical ideas; bathroom adaptations, ironing, ankle braces, compact footrests for WC, hanging towels with Velcro, shoelaces, back brace cover.

  •  Physical Therapy for FA

  • FA at School -- Telling Your Child's Class About Friedreich's Ataxia,  Students With Friedreich's Ataxia (where to download article), Individual Education Plan (IEP) for Students with Friedreich's Ataxia, Emergency Plan for School 

    • Students With FA by Gerry Lawrence -- excellent to give to school teachers and staff 

    • College Helps 

    • Math Software -- to show your work

  • Are you drunk? How to prepare your ataxic children to deal with this question 

  • Travel Guidelines to UCLA/CHOP

• SSI and Medicaid

• FA Fundraising 

• Current FA Fundraising Events 

  • 2003 Events

    •   Springfield, MA 

  • 2004 Events

  • 2005 Events

• FARA -- Friedreich's Ataxia Research Alliance 

• NAF for FA -- National Ataxia Foundation

• SAM-MDA for FA --Seek a Miracle MDA for Friedreich's ataxia

  • Telethon Page

    • MA Telethon

• Vitamins, etc.-- various www links on vitamins and supplements 

  • Problems and Pills by Michael Wilenski, MD 

  • NAC and CoQ10 by Sally Smith 

    • NAC Research 2001 - Therapeutic potential of N-acetylcysteine in mitochondrial neurodegerative diseases    

    • Dosage Guidelines - for Idebenone, CoQ10 and Vitamin E

    •  NAC-FAQ -- Frequently Asked Questions about N-Acetylcysteine 

      • University of Florida NAC Study-1995 

      • Summary article on NAC 

    • CoQ10 May Help -- article from Quest Magazine 

  • Where to get NAC, CoQ10, and the recommended vitamins and mineral

• In the News -- Individuals with FA and family members in the news

• Our Kids Speak Up - essays, poems, and other writings by our kids

• Poems 

• Quotes 

• Stories 

• Humor 

• Memorial Page -- In Loving Memory of Our Children 

• Photo Page- links to photos of FAPG family members 

  • Brianne's Adventures - Brianne Konanz skydiving and skiing, includes text 

• What's New on the WebPage