Grupo de Soporte Virtual en Español de MDF

¡Estás invitado a nuestro Grupo de Soporte Virtual en Español!

3er Sábado de Cada Mes
9:00 AM a 10:30 AM PST (hora Pacifico US)

¡Pulse aquí para registrarse!
Despues de registrado, utilice el enlace en su email de confirmación para unirse a cualquiera de las próximas reuniones. Si no recibe un correo electrónico de confirmación, comuníquese con info@myotonic.org.

Unete al Myotonic Dystrophy Foundation (MDF) para una reunión virtual de aprendizaje, comunidad y esperanza para familias de habla hispana con DM. ¡Cualquier persona que tenga DM de cualquier tipo (DM1, DM2, Congénito, Juvenil), así como familiares o amigos, están bienvenidos! ¡Comparte este evento con tus amigos en Facebook!

Liderado por dos miembros de nuestra comunidad, David Kugler y Araceli Mera, este evento te permitirá:

Oir sobre importantes actividades y recursos de MDF
Conectarte y compartir con otros miembros de nuestra comunidad, en un espacio confidencial y de apoyo personal
Entender cómo puedes participar como voluntario con MDF
Comparta tus ideas sobre cómo MDF pudiera apoyar mejor a la comunidad de pacientes de habla hispana

¿Alguna pregunta?

Puedes enviar tus preguntas en español a MDF, info@myotonic.org. Para compartir su información de contacto con David y Araceli, por favor llene este formulario.

¡Esperamos verte pronto!

Date(s)

Sat, 10/21/2023 - 05:00AM Add to Calendar 2023-10-21 00:00:00 2023-10-21 00:00:00 Grupo de Soporte Virtual en Español de MDF To know more about this Event, Just go to: https://www.myotonic.org/grupo-de-soporte-virtual-en-espa-ol-de-mdf-5 Location Myotonic Dystrophy Foundation info@myotonic.org America/Vancouver public

Myotonic Dystrophy News

November 20,2024

New Educational Series - Understanding Myotonic Dystrophy

MDF is excited to introduce “Understanding Myotonic Dystrophy”, a new series of short educational animations designed to educate people living with myotonic dystrophy (DM) and their healthcare providers! Our first animation “Understanding Myotonic Dystrophy – The Basics” is a broad introduction to myotonic dystrophy to help increase awareness and understanding.

October 18,2024

Research Archive: "Increased Frequency of Repeat Expansion Mutations Across Different Populations"

MDF's Chief Scientific Officer, Dr. Andy Rohrwasser, summarizes a study “Increased frequency of repeat expansion mutations across different populations” published in Nature Medicine in October 2024, an important genetic study examining the presence of repeat expansions including myotonic dystrophy (DM) in over 82,000 individuals. For our myotonic dystrophy community, the study confirms the high prevalence of DM1. The study also highlights the importance of vigilance for healthcare providers suspecting the disease as the repeat expansion might be present with low repeat numbers without any (yet) apparent symptoms.

October 18,2024

The World Glows Green in Celebration of International DM Awareness Day 2024!

In celebration of the 4th Annual International Myotonic Dystrophy Awareness Day, our incredible community members and partners from all around the world dressed for the occasion and lit their local and national monuments in green.

October 18,2024

MDF Announces 2024 Pilot Grant Recipients Selected & Request for 2025 Pilot Grant Applications

After rigorous review, we are excited to share that in September, the MDF Board approved four outstanding projects to receive the MDF Pilot Grants. These research efforts will focus on critical areas for DM, including sleep, dyslipidemia, exercise, and therapeutic delivery. We are also excited to announce the launch of a new round of our Pilot Grants Program this November! This program offers $50,000 in one-year support for researchers focused on myotonic dystrophy (DM).

September 15,2024

Global Alliance of 60+ Myotonic Dystrophy Organisations Celebrate the Fourth Annual International Myotonic Dystrophy Awareness Day

On the 15th of September 2024, the Global Alliance for Myotonic Dystrophy Awareness unites over 60+ organisations from around the globe to mark the fourth annual International Myotonic Dystrophy Awareness Day. This day is dedicated to raising awareness about myotonic dystrophy (DM), a complex and often misunderstood genetic disease that aﬀects thousands of individuals and families worldwide.

Questions?

Request Warmline Support! MDF offers a professionally staffed Warmline for people living with myotonic dystrophy, their caregivers, medical professionals and others to ask questions, find support and guidance and, when appropriate, be connected to additional resources and services. Click here to request Warmline Support.

Additional questions? Contact MDF by email at info@myotonic.org or give us a call at 415-800-7777.

¡Estás invitado a nuestro Grupo de Soporte Virtual en Español!

3er Sábado de Cada Mes9:00 AM a 10:30 AM PST (hora Pacifico US)

¿Alguna pregunta?

¡Esperamos verte pronto!

3er Sábado de Cada Mes
9:00 AM a 10:30 AM PST (hora Pacifico US)