Shaping Our Community Together

Understanding and sharing real life experiences of people living with Myotonic Dystrophy themselves, or within their family. 

Who are we?

The CureDM Focus Group is a supportive community made up of people who truly understand Myotonic Dystrophy. Together, we help guide research, raise awareness, share lived-experiences, and steer the work of the Charity. We warmly welcome patients, caregivers, and loved ones from all across the UK, inviting everyone to take part and help make a real difference to:

• help shape important Charity publications and research tools—like community surveys that reflect what matters most to you.
• get involved with Patient and Public Involvement and Engagement (PPIE). This might include reading over materials for rare disease trials and sharing your thoughts.
• share your personal experiences to help the Charity offer meaningful advice and support to anyone—whether they’re from industry, clinics, or the wider community.

If you are interested in joining the group or would like to utilise the expertise of our Myotonic Dystrophy Focus Group, please read the FAQ and contact us at Curedm@outlook.com.

Frequently Asked Questions

Are members of the group paid?

Everyone in the CureDM Focus Group volunteers their time. While Focus Group Members are not paid for their involvement, sometimes the Charity may receive a donation or reimbursement for a project. If this happens, we’ll always let you know in advance so you can choose whether you are happy to participate in that project.

What does participation involve?

How you participate is always up to you, and every project is different. You might be asked to take a look at documents to make sure they’re clear and helpful, or you might be invited to share your priorities and ideas on certain topics.  Most meetings will be online meetings, or you can share your thoughts by email if that works better for you. Our group is welcoming and relaxed – every voice matters.

Is it a big time commitment?

There’s no fixed time commitment. Whenever community input is needed, we will contact group members based on their preferences, and you can decide if you want to take part. We aim to hold regular online catchups every few months. When there is a project, we will either add another on-line meeting, or participants may be able send their thoughts by email. Right now, we don’t meet in person, but that could change in the future.

Do I need to have experience?

You don’t need any formal experience or qualifications, just a willingness to share your perspective. CureDM makes sure that everyone’s voice is heard, because we know how varied and unique each experience with Myotonic Dystrophy is. We’re here to include everyone.

Will there be any costs involved?

No! There are absolutely no costs for volunteers who join the group.

Who can apply to be in the group?

If you are living with, or support someone living with, DM1 (any onset) or DM2 and you’re based in the UK, you’re welcome in our group.

Will my personal information be shared?

Your privacy really matters to us! Rest assured, everything shared in our meetings and discussions stays just between us. If we ever share reports or publications, all names and any details that could identify you will be carefully removed. Whether you want to tell others about your involvement or keep it private within the group is completely up to you – we support whatever makes you comfortable.

Can I tell others what we are talking about?

To keep our group a safe space for everyone, we request that you not share the details of our discussions, or other group members, outside the group. This helps protect everyone’s privacy and ensures that everyone can speak freely and comfortably.

How do I apply to be in the group?

Interested in joining? Simply fill out the application form below, and if you have any questions, you can always reach out to us at curedm@outlook.com.

We look forward to hearing from you!