Nemaline Myopathy Support Group

Resources

Publications

Online articles, books and magazines

Online

  • MDA USA Quest magazine article on myopathy.
    Quest Feb2000 The latest NM article in Quest.
    Quest anesthesia article Be aware of problems in surgery.
    MDA USA factsheet Facts About myopathies.
    A postal copy of Quest magazine is available by subscription. The website is usually updated several weeks after issue publication.
  • RT Magazine The Journal for Respiratory Care Practitioners.
  • Where there's loss, there's grief. Quest article on losing muscle strength.
  • The Gene Reviews web site, a publicly funded medical genetics information resource developed for physicians, other healthcare providers, and researchers, available at no cost to all interested persons. A one-time registration process is required. On 25 June 2002, I received an email from Gene Reviews to inform me that they have added the Nemaline Myopathy Foundation as a resource to their article on nemaline myopathy.
    GeneReviews is an online publication of the University of Washington, funded by the National Institutes of Health (NIH), and is freely available on the GeneTests-GeneClinics website. GeneReviews entries are viewed about 2,000 times each day by more than 30,000 registered users

Books

Amazon
FragileFragile
Niki Shisler













KenNo Cure, No Surrender
Ken Hobbs
Click here to see the sleeve design















Literature for women with NM thinking of pregnancy

  • Anderson, P., Kitchin, R. (2000). Disability space and sexuality: Access to family planning services. Sexuality and Disability, 51, pp. 1163-1173.
  • Champong, G., Howland, C., Nosek, M., Rintala, D., Young, M. (2001). National study of women with physical disabilities: Final Report. Sexuality and Disability, 19 (1), 5-39.
  • Prilleltensky, O. (2003). A ramp to motherhood: The experiences of mothers with physical disabilities. Sexuality and Disability, 21, (1), 21-47.
  • Farber, R. (2000). Mothers with disabilities: In their own voice. American Journal of Occupational Therapy, 54 (3), 260-268.
  • Grue, L., Laerum, K. (2002). Doing motherhood: Some experiences of mothers with physical disabilities. Disability & Society, 17, (6), 671-683.
  • O' Toole, C. (2002). Sex, disability and motherhood: Access to sexuality for disabled mothers. Disability Studies Quarterly, 22 (4), 81-101.
  • Thomas, C., Curtis, P. (1997). Having a baby: Some disabled women's reproductive experiences. Midwifery, 13, 202-209.
  • Cunningham, C., McKay-Moffat, S. (2006). Services for women with disabilities: Mothers' and midwives' experiences. British Journal of Midwifery, 14 (8), 472-477.
  • Additional Resources:
    The Disabled Woman's Guide to Pregnancy and Birth by Judi Rogers.
    Disability in Pregnancy and Childbirth. Edited by Stella McKay-Moffat (This book was available on www.Amazon.com as at May 2010. Please use either of the links on the home page to reach Amazon and help us raise a little commission at no cost to you.)

Magazines

Promoting mobility for disabled people.
A UK monthly magazine with loads of useful articles on all issues of mobility. Good source for info on holidays, motoring, accessibility, accessories, discounts and useful addresses. Annual subs.
David McDougall

Booklet, Pamphlet

  • Everybody's Different (nemaline myopathy version)
    Adapted from: Everybody's Different Nobody's Perfect. by Dr. Irwin Siegel, for the Muscular Dystrophy Association.
    Email davidmcd_@hotmail.com for a copy in MS Word format. A pdf format of the original (MDA) version can be printed from here. (Written in English and Spanish)
  • Facts about myopathies (including nemaline myopathy)
    An MDA booklet(PDF format) available online.
  • Guide to Respiratory Care for Neuromuscular Disorders by Muscular Dystrophy Canada
    A comprehensive 52 page booklet well worth printing out as a handy copy.
  • A Teachers Guide to Neuromuscular Disease is published by Muscular Dystrophy Association(USA).
    A downloadable booklet to pass to anyone interested in learning about muscle disorders.
    English version: Download a printable .pdf of this entire booklet.
    Para el folleto en español: Descargar el folleto en formato PDF para imprimir