DM-family is an association of myotonic dystrophy patients which is active in the following areas.
To contribute to DM research as patients
Cooperation with the Registry and Natural History Research
To increase enrollment in the Japanese registry known as the Neuromuscular Disease Patient Registry Center - Remudy, we constantly encourage patients and their families to register.
We have also encouraged them to participate in natural history research on Japanese patients.
As of February 2024
A Series of Lectures to Learn from Basic Research to Therapeutics
To help patients and their families keep up with the rapid pace of therapeutic drug development, we offer lectures that include basic research.
In 2023, we hosted a series of webinars on genetic basics and causes of the disease, genome editing basics, and epigenome editing treatments.
Exhibiting at Academic Conferences
We exhibit at the Japan Neurological Society and other conferences to provide detailed information about myotonic dystrophy to non-specialist medical professionals. It also serves as a place for pharmaceutical companies interested in meeting DM patients and their families. The exhibition is a cooperative effort between patients and their families, and we value our friendship with each other.
Introducing Therapeutics Companies from around the World
It is important for patients and families to know the names of companies which are developing therapeutic drugs for future clinical research. We have posted the company names and logos on the Myotonic Dystrophy Type 1 Drug Development Status Chart to provide patients and families in Japan with the latest information.
As of March 2024
Presentations from Companies in Various Countries
We invite companies from various countries to make presentations to patients and families in Japan. Through consecutive interpreting, which is easier for hearing-impaired patients to follow, we promote a better understanding of what types of treatments are available.
In 2022, we hosted the IDMC-13 Families Day Webinar “Clinical trials have already begun- Myotonic Dystrophy: The Development of Therapeutic Drugs and the Future” and shared the results of the latest clinical trial with patients and families around the world.
To Enrich the Hearts and Minds of Patients and Their Families
Sharing a Patient Journey that Touches your Heart
Patients and families with intractable diseases find it difficult to talk about themselves. Slowly, over time, with the support of family members and physicians, we listen to their stories about their lives -- a wonderful time to spend.
Rehabilitation of Dysarthria at Home
Dysarthria, which is common in DM patients, affects communication and can be isolating. Speech therapists provide dysarthria rehabilitation and compare the effects before and after training. Patients can learn to speak more clearly and confidently.
Feasibility Study on Support through Dialogue
DM-family is conducting a feasibility study to see if it is possible to work together through dialogue on concerns which are common to DM patients and families, such as concerns about genetics, concerns about family members, and minor medical questions. Volunteers learn about bioethics, law, and social services, as well as medical knowledge from specialists and workshops with genetic counselors and cognitive behavioral therapy instructors, which are considered necessary for dialogue support.
To raise public awareness about DM
Meeting with Experts to Learn about the Disease and Precautions
DM patients, who may appear to be fine, actually have a wide range of hidden symptoms. They are often unaware of their symptoms, and people around them, including family members, need to be aware of the abnormalities. We invite specialists and researchers to describe the characteristics of the symptoms to raise public awareness.
Host Parties Where People Come Together and Make Friends
We hold tea parties on various occasions.
We aim to expand the network of DM patients by inviting not only the patients and their families who cannot meet in person, but also those who are interested in supporting them.
Attending the Global Alliance for DM Awareness, Connecting with Friends around the World
DM-family is a member of the Global Alliance, a group of 57 organizations worldwide dedicated to myotonic dystrophy.
Under the slogan "September 15 is International Myotonic Dystrophy Awareness Day," we are committed to raising awareness of myotonic dystrophy among patients, families, and people from all walks of life.
DM-family aims to overcome this disease not only in Japan, but also in cooperation with other countries around the world, so that patients can contribute to society.