The MDF went to Washington, DC, last week to represent the DM community and participate in the Rare Disease Legislative Advocates Conference and Lobby Day.
The Facts: Myotonic Dystrophy, by Prof. Peter Harper, published by Oxford University Press, 2002. A hundred-page book written for families living with myotonic dystrophy, written in easy-to-understand language. A good place to begin educating yourself. Available online at Oxford University Press or Amazon.com. Also included in the MDF Toolkit, hardbound edition.
The VIP List (formerly the Medical Professionals Referral List) is a community-generated list of physicians and healthcare providers who have experience working with DM patients. This information was compiled by TeamMDF and other community members like you. Help us continue to build this list! Click here to refer medical professionals you work with who have experience with myotonic dystrophy.
Financial Resources for People Living with DM offers a compilation of financial resources available on a federal/national level for people living with myotonic dystrophy in the United States. The information was compiled by Dr. Leslie Krongold, a member of the extended MDF team, a DM support group leader and a DM community member. Click here to go directly to the document, or click here to download the information as a PDF.
MDF Toolkit, produced by the Myotonic Dystrophy Foundation ©2012. MDF has created an easy-to-use Toolkit with the guidance of the MDF medical and scientific advisory committee. The Toolkit includes valuable information for affected individuals and their families, detailed information and resources for medical professionals, Myotonic Dystrophy: The Facts, by Prof. Peter Harper, a wallet-sized medical alert card, a medical history sheet and much more.
Anesthesia Guidelines. Regardless of the form of DM or the severity of DM symptoms experienced, individuals can have severe and life-threatening reactions to anesthesia and should be monitored carefully whenever anesthesia is administered.
MDF Warmline. Professionally staffed phone and email support for people living with myotonic dystrophy, their caregivers, medical professionals and others interested in support, guidance, advice and resources for myotonic dystrophy.
Myotonic Dystrophy – Present Management, Future Therapy, edited by Prof. Peter Harper, published by Oxford University Press, 2004. A 240-page book written by DM experts from around the world, geared to medical professionals. Highly technical descriptions; great book to own in order to take to medical appointments as specific symptoms arise.
Myotonic Dystrophy, 3rd Edition, by Prof. Peter Harper, published by W.B. Saunders, 2001. A 400-page book on DM written for medical professionals. Highly technical descriptions.
Disabled and Challenged: Reach for Your Dreams, by Terry Scott Cohen and Barry M. Cohen, published by WishingUwell Publishing, 2005. A 130-page book written by a young adult with myotonic dystrophy along with his father, a psychologist.
Genetic Instabilities and Neurological Diseases, 2nd ed., by Robert D. Wells and Tetsuo Ashizawa, published by Elsevier Academic Press, 2006. Highly technical descriptions.
Helping Friends: Helpful Hints for Persons Living with Myotonic Muscular Dystrophy, published by The Myotonic Dystrophy Assistance and Awareness Support Group (MDAASG). A helpful guide by a Los Angeles-based group for families dealing with DM. Note: In this document, myotonic dystrophy is abbreviated as MMD rather than DM. Click here to download. Posted with permission from MDAASG.
PubMed is a searchable database of published scientific research articles maintained by the National Library of Medicine. This site is designed for researchers and clinicians and contains journal articles about research in myotonic dystrophy. View their online tutorials on the use of the site. Visitors can search terms such as myotonic dystrophy, Steinert’s disease, proximal myotonic myopathy, and PROMM to find articles about research into myotonic dystrophy. www.ncbi.nlm.nih.gov/pubmed
Groups and Organizations
A variety of organizations exist in the United States and around the world to support people living with myotonic dystrophy. For more information and links to organizations in your area, click here.
Click the link to the right to visit MDF's Video Academy and watch educational videos on a variety of DM topic areas.