Nemaline Myopathy Support Group

Fundraising

There are several options for donating to nemaline myopathy (NM) :

 

Caterina Grace Foundation is the newest registered charity for nemaline myopathy and is based in New York. A charity set up by parents in memory of their daughter Caterina Grace. They have a website and a Facebook page.
Supporting MAP Nemaline which helped to bring about a one day workshop held by Muscular Dystrophy UK, bringing together researchers and clinicians from around the world to review the field of nemaline myopathy in order to drive forward the development of treatments.

The NM Support Group (NMSG) in UK, raises money towards organising NM meetings and helping families attend them. NMSG also raised money to buy two ventilators for little Majeda in Palestine as she was using the only one the hospital had. It is hoped eventually that NMSG will be able to help pay for more equipment families cannot afford or get funding from other sources. All these organisations are solely for nemaline myopathy. Some other charities raise funds for a wide range of neuromuscular disorders. Research into other dystrophies and myopathies may also have some mutual benefits for NM. Please email me if you would like more advice or help in organising an event such as those below. Other ideas to be added are always welcome.

Friends and family : Use social media to spread the word. (Join the Nemaline Myopathy Support Group on Facebook.)

The NM Foundation (a 501 charity in USA) was created in 2001 to raise money for research and expand awareness about NM. This has included sponsoring our international conferences and the scientists who gave talks and met the families.

A Foundation Building Strength (a 501 charity in USA) concentrates on fundraising for scientific research.

We are always interested to hear from people willing to help us with fundraising. Companies are especially welcome to donate or sponsor in return for free advertising on this webpage. Please contact davidmcd_@hotmail.com for more details. Thank you.

Donations

Donations can also be made by bank transfer or Paypal to Nemaline Myopathy Support Group.
Please contact me for details.
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Supporting MAP Nemaline

MAP Nemaline is a UK registered charity, and was set up with the help of Muscular Dystrophy UK in order to directly fund research into nemaline myopathy.

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