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The Monica Ellis Children’s Medical Research Grant will help children like Sophie by finding treatments and a cure for FSHD, the most common form of muscular dystrophy affecting children and adults across the world. As Australian Charity of the Year in 2017, FSHD Global has a transparent funding model that sees 100% of your donation go towards life-changing medical research.

  • 1.00% Progress
  • $5 Donated
  • $100,000 Target

  • Started: 02/05/2017


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FSHD Global Research Foundation has launched the Monica Ellis Children’s Media Research Grant  (Monica’s grant) to remember a beautiful and inspiring member of our community, Monica Ellis, who passed away from FSHD in 2015.

Monica’s grant specifically funds medical research into Infantile FSHD which will focus on the study of children with the condition, like 10 year-old Sophie.  

Sophie may have a beautiful smile, but life with FSHD is getting tougher for her.  She is now confined to a wheelchair and recently asked her Dad when the doctors will be able to find a pill to make her legs work.  While Sophie is a happy, vibrant little girl who loves to have fun with her sisters and friends, she misses out on so much because her muscles are getting weaker by the day.  

Sophie would love to take part in her school athletics and cross country carnivals, but her wheelchair makes it difficult and she is worried that people will laugh at her.  She told us that having FSHD makes it hard for her to play with her friends.  

Facioscapulohumeral muscular dystrophy.  It’s quite a tongue twister, isn’t it?  Known as FSHD for short, it’s a genetic neuromuscular disease that results in the weakening and loss of skeletal muscles commonly in the face, shoulders and arms.  It affects around 1 million children and adults around the world, including Sophie.

There is currently no known cure or effective treatment for FSHD.

You can give hope to Sophie and other kids with FSHD by donating to the Monica Ellis Research Grant that will benefit the lives of children and young people with FSHD. Our goal is to raise $100,000 for this international grant and we very much hope you can join with us to make it happen.


Monica Ellis was diagnosed with Infantile FSHD when she was just 5 years old and is an inspiration to us all.  Despite her FSHD, Monica did not let her physical limitations interfere with living her life to the fullest. Monica believed that “having a disability just throws a spotlight on other choices”. She campaigned tirelessly with us, looking for treatments and cures that she knew would not come in her lifetime. She had a beautiful mind, personality and a wicked sense of humour.  Monica was an enthusiastic supporter that was tireless in her interest and willingness to assist.

Help us build a legacy for Monica and pave the way to improve the quality of life of children living with FSHD.








The FSHD Global Research Foundation is a not-for-profit organisation recently awarded Australian Charity of the Year for 2017.  Founded in 2007 by Bill Moss AO, a well-known Australian businessman, philanthropist and sufferer of FSHD, we are a pocket-rocket organisation driven by passion and purpose to find treatments and a cure for Facioscapulohumeral Dystrophy (FSHD) as quickly as possible.

FSHD has never received any government funding in Australia, and research is estimated to lag behind research into other forms of muscular dystrophy by around twenty years.

In a short time the Foundation has created a huge amount of momentum, and we haven’t let our lack of government funding stop us.  Over the past 10 years we have raised more than $9M and inspired scientists across the globe to join with us to research this disease and help improve the quality of life for the people and their families suffering from it.  We have funded 42 grants in 9 countries that have seen a number of major breakthroughs in research, awareness and education and we are now approaching the exciting stage of clinical trials.  

Best of all, through our award-winning Find a Cure Mobile App, donors are able to track their donation to see which project they have funded and keep informed about how the research is tracking. We are incredibly proud of our fully transparent and accountable finding model.

FSHD Global is a little organisation doing very big things…but we need your help to continue this fight against FSHD muscular dystrophy.



The FSHD Global Research Foundation directs 100% of all tax deductible donations to medical research to find treatments and a cure for FSHD.  Our award-winning structure is supported by two separate bank accounts: the first funds global medical research with all tax deductible donations we receive, and the other non-tax deductible account funds our operating costs through through sponsorships of our events. FSHD Global’s Head Office operates from an office space donated by a legal firm in Sydney CBD. We also have branches in all states of Australia to expand our education programs nationally. Our State Branches are run by volunteers, many of whom are FSHD sufferers themselves.