Care Tools Research

Do you have questions about brain-fog and the cognitive issues associated with DM1? Join DM expert Benjamin Gallais, PhD, of the The Center for the Study of Living Conditions and the Needs of the Population (ECOBES) for an “Ask-the-Expert” session on Key Neuropsychological Features of DM1.

Do you have questions about brain-fog and the cognitive issues associated with DM1? Join DM expert Benjamin Gallais, PhD, of the The Center for the Study of Living Conditions and the Needs of the Population (ECOBES) for an “Ask-the-Expert” session on Key Neuropsychological Features of DM1.

Myotonic hosts bimonthly Facebook chats on the first and third Tuesday of each month, led by one of our support group facilitators.

Speech disorders (dysarthria) in CDM and childhood-onset DM1 have long been recognized and surveillance by speech and language therapists is an important aspect of patient care. Facial weakness and myotonia, and involvement of oral cavity, palatopharyngeal and respiratory muscles, are known to contribute to speech impairment.

To develop new therapies for patients living with myotonic dystrophy (DM), specific infrastructure and information needs to be in place to make clinical trials feasible. The information needed for CDM trials is likely to be different than that used for adult trials.

A new study points to the timing of MBNL-dependent RNA processing defects as a major factor in the pathogenesis of CDM.

A new study points to the timing of MBNL-dependent RNA processing defects as a major factor in the pathogenesis of CDM.

Epigenetic modifications upstream of an expanded DMPK allele may underlie the maternal bias in the inheritance of CDM.

Epigenetic modifications upstream of an expanded DMPK allele may underlie the maternal bias in the inheritance of CDM.

Dr. Dixon at the University of Utah has been awarded a 2016-2017 postdoctoral fellowship for her research applying fMRI to evaluate connectivity networks in the brains of children with congenital-onset myotonic dystrophy (CDM). Read more here about the work of Dr. Dixon and her colleagues.

www.bridgingapps.org - a program and website of Easter Seals Greater Houston that provides resources, education, and information on apps and mobile devices to help people with disabilities target and improve skills and reach their highest

To find out more information about art therapy, or to find a referral to an art therapist near you, check out www.arttherapy.org locate your local art therapy chapter and request an art therapy referral.

Community members discuss daily living strategies for motivating their adult children living with juvenile-onset DM1.

Community members Penni Warford, Sarah Clarke and Ann Spaulding discuss best practices for planning and implementing your child's Individualized Education Plan.

Dr. Craig Campbell, MD, of Western University in Ontario, Canada, has a discussion with audience members about congenital DM.

Community-led session led by Sarah Berman, Erica Kelly, and Catherine Wycoff, DPT, GCFP, ABMCP. Parents of children living with DM and a hippotherapy specialist discuss the benefit that this type of therapy can often have.

Join the Myotonic Dystrophy Family Registry and help accelerate myotonic dystrophy research and drug development! 

Join the Myotonic Dystrophy Family Registry and help accelerate myotonic dystrophy research and drug development! 

New research on the impact of the mother's age on congenitally affected offspring.

New research on the impact of the mother's age on congenitally affected offspring.

New research on the impact of the mother's age on congenitally affected offspring.

Both DM1 and DM2 are passed from parent to child by autosomal dominant mutations. This means that the faulty gene is located on one of the chromosomes that does not determine sex (autosome) and that one copy of the mutated gene is enough to cause the disease (dominant).

Both DM1 and DM2 are passed from parent to child by autosomal dominant mutations. This means that the faulty gene is located on one of the chromosomes that does not determine sex (autosome) and that one copy of the mutated gene is enough to cause the disease (dominant).

This webinar is presented by a group of mothers offering their knowledge and experience raising children with congenital DM. This webinar includes informed, practical suggestions from alleviating gastro-intestinal challenges with proper diet and natural supplements to advocating for your child's Individualized Education Program (IEP).

To support our commitment to DM research, MDF awards fellowship grants to postdoctoral researchers as part of our annual Fund-A-Fellow (FAF) program. We recently caught up with one of our current grant recipients, Dr. Nicholas Johnson, Assistant Professor of Neurology at the University of Utah.

Nicholas Johnson, MD, and researchers at the University of Rochester recently published an article in The Journal of Child Neurology that describes the impact of childhood and congenital myotonic dystrophy on quality of life.

An MDF community member and mother describes the medical team she has assembled for her daughter, Kate.