TMDCN Community Conversations is a recurring online programme created by The Muscular Dystrophy Campaign Nigeria (TMDCN) to bring people together to talk openly about the realities of living with muscular dystrophy and other neuromuscular conditions.

The programme brings together people living with muscular dystrophy, parents and families, carers, healthcare and rehabilitation professionals, disability advocates, researchers and other members of the community.

It provides a safe and welcoming space to share experiences, ask questions, learn from others and explore practical ways of navigating life with muscular dystrophy in Nigeria.

Our conversations recognise that living with muscular dystrophy is about more than medical care. It can affect education, employment, relationships, mobility, independence, emotional wellbeing, finances and family life. By bringing different voices together, we hope to create greater understanding and provide information and support that is relevant to everyday life.

Community Conversations will take place online throughout the year, with sessions typically held monthly or quarterly. Each conversation will focus on a particular issue and may include people with lived experience, healthcare professionals, specialists, advocates, researchers and other relevant speakers.

Purpose

Through TMDCN Community Conversations, we want to inform, connect, empower and listen.

We aim to make reliable and accessible information available to people affected by muscular dystrophy and help individuals and families better understand their options and navigate the challenges they face.

We want to connect people with others who understand their experiences while creating opportunities for dialogue between the community, healthcare professionals, researchers, advocates and other stakeholders.

We also want to listen to the people at the heart of the muscular dystrophy community. Their experiences, concerns and priorities are essential to understanding what needs to change and where greater support is needed.

Through these conversations, we hope to raise awareness, challenge stigma and contribute to a more informed, supportive and inclusive society for people living with muscular dystrophy and other neuromuscular conditions in Nigeria.

What We Talk About

The muscular dystrophy experience is different for every individual and family, and there are many issues that deserve to be discussed. Our conversations may explore diagnosis and access to appropriate healthcare, physiotherapy and rehabilitation, maintaining mobility, respiratory and cardiac care, and the emotional and psychological impact of living with a long-term condition.

We will also discuss issues affecting children and young people, including education, inclusion and supporting children to reach their potential. Other conversations may focus on accessibility, assistive devices, independent living, employment and financial challenges.

Family and caregiver experiences are also an important part of the programme. We may explore genetic counselling and family planning, navigating healthcare and social support services, and the challenges families face when trying to access appropriate care and support.

As research and understanding of neuromuscular conditions continue to develop, we will create opportunities to discuss research, participation in research and emerging developments in muscular dystrophy care and treatment.

More Than a Conversation

Every person affected by muscular dystrophy has a story, and every story can teach us something.

Community Conversations brings together two important sources of knowledge: lived experience and professional expertise.

People living with muscular dystrophy and their families can share what life is really like, including the challenges they have faced, the solutions they have discovered and the lessons they have learned.

Healthcare professionals and specialists can provide reliable information, explain complex issues and offer practical guidance based on their professional knowledge and experience.

When these perspectives come together, they create a fuller picture of muscular dystrophy and the realities of living with the condition in Nigeria.

Most importantly, Community Conversations is not simply a platform where experts talk to the community. It is a two-way conversation. Participants are encouraged to ask questions, share their experiences, raise concerns and contribute to discussions about the issues that matter most to them.

Who Can Join?

TMDCN Community Conversations is open to everyone interested in muscular dystrophy and other neuromuscular conditions.

People living with muscular dystrophy are at the heart of the programme, and we encourage individuals to share their experiences and perspectives. Parents, families and carers are also welcome to participate, learn from others and share their own experiences.

Healthcare and rehabilitation professionals, disability advocates, researchers, students, organisations, friends, supporters and anyone interested in learning more about muscular dystrophy are also welcome.

You do not need to be a member of the TMDCN Connect Network to participate.

Whether you come to share your experience, ask a question, provide professional insight or simply listen and learn, there is a place for you in the conversation.

How It Works

Community Conversations takes place online through WhatsApp and other appropriate digital platforms, depending on the format of each session.

Some conversations will be informal discussions where community members can share their experiences and perspectives. Others will feature invited speakers and may include expert presentations, interviews, panel discussions or question-and-answer sessions.

We want the conversations to be accessible, welcoming and interactive. Participants will have opportunities to engage with speakers and other members of the community and, where appropriate, contribute questions and comments during the session.

Some sessions may be recorded or summarised to allow useful information to reach people who were unable to attend. Any recording or use of participants’ contributions will be undertaken with the necessary consent and appropriate consideration for privacy.

Our first Community Conversations will launch in September 2026 with a series of discussions exploring important issues affecting people living with muscular dystrophy and their families.

The launch series will provide an opportunity for the community to hear from experts, listen to lived experiences and participate in open question-and-answer discussions.

For the latest announcements, session details and updates about TMDCN Community Conversations, visit our News section.