Nemaline Myopathy Support Group


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.

Tthe 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 for more details. Thank you.


Donation cheques should be made out to NM Support Group and addressed to:
NM Support Group
EH45 9JQ

Please contact me before using this Paypal account. I would need to check it is still open.
A PayPal account is now available. Donations can be made in many different currencies with very little or no deductions for service charges involved. Use your PayPal account to send money to Please also email and let me know funds are incoming as I will only be checking the NMSG email account every few weeks.

Plant a tree

If you would like to have a tree planted in honour of someone you know with NM, then see the details.

See details »»

Make a coin collection tin

We can design an information sheet to print out and wrap around various sized containers. Mini Cheddars, Ritz Crackers, Pringles tubes. These have plastic lids that you can easily cut a coin slot into.

Quiz sheet

Everyone likes to do quizzes and see how clever they are. Let's create a quiz sheet to sell to people for 50cents, 50pence.

Car, truck or bus push/pull race

Teams line up to push / pull identical vehicles along a measured length. (Perhaps contact your local car dealer?)
Get a team of family and/or friends and push a vehicle round a track as many times as possible in a set time (20, 30, 45 minutes). Ask people to sponsor your team per lap.

Guess the number of sweets/candy in a jar

Find a large clear glass/plastic jar and fill it with a mixture of different types and sizes of candy. People pay $1/ £1/ €1 to guess the number of items inside and add their guess to the list on a sheet of paper. The person with the closest guess wins the jar of candy. The winner also gets toothache!



Raffle prizes donated by shops, businesses, friends

Display your prizes on a table at work or fair day stall etc. Cloakroom tickets are sold and people write their contact details on the stubb which goes into a bucket, hat, or ballot box etc.

Fancy beard competition

Ask your male friends to pay $5 to grow their beard for two weeks or more. They can create any style they wish. A winner is chosen by an independent group of women. The best beard design wins 40% of the funds raised. This isea is based on Movember where men grow moustaches for a month in aid of cancer research.

Guess the Teddy Bears birthday

Buy a good quality Teddy Bear and a calendar/diary. Choose a date and write it on a card sealed in an envelope. Ask people to enter their name and email or phone no. on a chosen date. Once the calendar/diary is full, you reveal the winning date. The winner gets the Teddy Bear.

Run a stall

Run a garage sale, car boot sale.
Ask family and friends for old/unused toys, games, household goods etc. home made items, such as knitted clothing, extra plants from your greenhouse. All for selling on a stall.

Men's leg, chest or back waxing

Or shave someone's head for a donation. Ladies! Get your own back for all the jokes about waxing being painless. Pay $10 to wax a hairy guy. Men also pay $2 for every yell, scream or wince!

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.

Learn more »»

A Foundation Building Strength


A Foundation Building Strength is a non–profit organization dedicated to finding treatments for Nemaline Myopathy.

Contact Information:
Marc Guillet
3825 El Camino Real
Palo Alto, CA 94306

Learn more »»

Nemaline Myopathy Foundation


The Nemaline Myopathy Foundation is an organization created by adults with NM and families of those affected by Nemaline Myopathy.
The NM Foundation was inaugurated as a "not-for-profit" charity on June 21st 2001. We aim to raise awareness and assist more research into nemaline myopathy.

Learn more »»