Nemaline Myopathy Support Group

Introductions

Nemaline Myopathy Support Group

Why We Are Here

The NM Support Group was created to raise awareness of nemaline myopathy and help families dealing with it on a daily basis. NMSG has not yet gone as far as becoming a registered charity. However, in the UK, we do not have to be. The rules allow us to operate with a Treasurers bank account. This does limit us in some ways, but also avoids Board meetings and hiring an accountant. We are still able to raise funds towards our conferences and helping people attend them.

Sometimes when people donate money to a good cause, they want to know how their money will be spent. NMSG funds will be used for helping people with NM rather than scientific research. So far, we have fundraised towards our conferences, and helping a young girl in West Bank Palestine by raising money towards the purchase of two bi-level ventilators, as she was using the hospitals only machine and could not go home to her family. We hope to assist more families and individuals with NM in other ways in the future.

Plant a tree for NMSG

image

Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
Learn more »»