Living with myotonic dystrophy can mean managing a range of symptoms and preparing for medical appointments and procedures. It can also mean communicating with healthcare providers and making decisions about your care and daily life. Having the right information and resources at the right time can make these challenges easier to navigate.
The Myotonic Dystrophy Foundation Toolkit brings together key MDF resources designed to put practical, reliable information in the hands of people living with DM, their families and caregivers, and the healthcare professionals who support them.
The new DM1 Guide and DM2 Guide are the core resources in the updated MDF Toolkit and are available digitally now.
The full printed Toolkit will be available in early 2027. It will bring these resources together in one package, mailed directly to community members, so individuals and families can keep important information readily available and share it with healthcare professionals.
What Will Be Included?
The full Toolkit will include printed resources for both the DM community and healthcare professionals.
Resources for Individuals and Families
- DM1 Guide or DM2 Guide
A comprehensive guide designed specifically for people living with DM1 or DM2, as well as their caregivers and loved ones. The guides cover understanding DM, how it can affect different body systems, daily life and modifications, anesthesia safety, building your care team, family planning, legal decision-making, intimacy, insurance and financial resources, and ways MDF can support you. - Medical Alert Card
A convenient card to help communicate important information about your DM diagnosis and medical needs during healthcare visits and emergencies. - Anesthesia Bracelet
A wearable reminder that alerts healthcare professionals to important anesthesia considerations associated with DM. - Exercise Infographic
Practical guidance to help people with DM understand safe and appropriate approaches to physical activity and exercise. - DM and the Heart: A Community Guide
A resource focused on heart health and DM, including information to help individuals understand potential cardiac concerns and work with their healthcare team. - Clinic Visit Planner
A practical resource that enables families to discuss upcoming clinic visits and jot down important questions and information to help ensure it is covered at the appointment.
Resources for Healthcare Professionals
- A Letter from MDF’s Medical and Scientific Advisory Committee
A brief introduction to DM and its importance for healthcare professionals, highlighting key considerations and the many body systems DM can affect. - A Quick Reference Clinical Care Guide for DM1 or DM2
Concise, practical clinical information to help healthcare professionals recognize and manage the healthcare needs of people living with DM1 or DM2. - Quick Reference Anesthesia Guide
Essential information to help healthcare professionals understand and safely manage anesthesia considerations for people living with DM.
The MDF Toolkit was created by MDF staff & volunteers under the guidance of the MDF Scientific Advisory Committee.
How Should I Use the Toolkit?
Share the resources labeled “For Healthcare Professionals” with your medical team. You can send digital copies, bring copies to an appointment, or ask the clinic to copy the originals so you can keep them.
The DM1 and DM2 Guides are written for individuals living with DM and their families, but you can also bring your guide to medical appointments as a reference. Share the digital version with your healthcare team, or ask them to make physical copies of the pages they need so you can keep your guide.
Coming in Early 2027
The full MDF Toolkit will be available in early 2027 as a package of printed resources for the DM community and healthcare professionals. Printed MDF Toolkits will be limited to one per person and two per household. If additional resources are needed, they can be accessed digitally.
In the meantime, the new digital DM1 and DM2 Guides are available! These guides are a major update and expansion of MDF’s previous toolkit, with distinct resources tailored to DM1 and DM2. They incorporate current research and clinical knowledge and have undergone extensive review by medical and scientific experts and members of the DM community.
Additional Support
Have questions or need help connecting with the DM community? Reach out to MDF for one-on-one support at info@myotonic.org, call 415-800-7777, or request support online.
You can also find further support resources by visiting our Find Support page.
