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“In honour of an incredible woman we launch a special grant.” The FSHD Global Research Foundation focuses on finding treatments and a cure for FSHD. In doing so, we fund world-class medical research, awareness and education. We are also committed to complete transparency and accountability in our operations.

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  • $5 Donated
  • $100,000 Target

  • Started: 02/05/2017

Monica Ellis Children’s Medical Research Grant (Monica’s Campaign)

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Monica was diagnosed with Infantile FSHD when she was five.  Due to this disease’s cruel muscle wasting, Monica quickly became confined to a wheelchair, she could not sit upright, lost the ability to chew and speech became difficult, however Monica refused to let this crippling disease define her as a person.

On March 4, 2015 the Foundation lost its Founding Patron, enthusiastic supporter and valued friend Monica Jean Ellis.  Monica was, and remains an inspiration to the families around the world afflicted by Infantile FSHD.

Monica worked beside the Foundation looking for treatments and a cure, she knew a cure would be too late for her but she was tireless in her interest and willingness to assist.

In honour of this incredible woman, in 2016 the FSHD Global Research Foundation launched the Monica Ellis Children’s Medical Research Grant, aimed at improving diagnostics and treatments for children affected with this debilitating disease.   

This International Grant requires $100,000 per year for three years to fund ground-breaking projects into FSHD, this campaign is set to raise funds for the Grant’s second year funding target.

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

ABOUT FSHD GLOBAL RESEARCH FOUNDATION

The FSHD Global Research Foundation is a pure Australian not-for-profit organisation, investing 100% of all tax deductible donations to find treatments and a cure for one of the most common form of muscular dystrophy – Facioscapulohumeral Dystrophy (FSHD).

With a commitment to complete transparency and accountability, the Foundation is leading the charge to fund world class medical research, awareness and education, improving the quality of life for people and their families suffering from this cruel and misunderstood disease. Characterised as progressive muscle wasting disease which causes loss of facial, shoulder, and upper arm muscle, FSHD is an aggressive genetic disorder affecting 1 in 7,500 Australians.

There are no treatments and no cure for FSHD.

Established in 2007 by Bill Moss AO, a well-known Australian businessman, philanthropist and sufferer of FSHD, we learnt very quickly that this aggressive and genetic disease does not discriminate, affecting young and old from all ethnic groups with crushing effect.

The Foundation relies on funding from individuals afflicted by FSHD, their friends, supporters and corporate sponsors. It is a very lean yet pure organisation, relying on non-tax deductible revenue and sponsorships to support all overhead expenses, meaning every single dollar donated can be invested into world class science – this award winning charity model has been acknowledged and copied around the world.

With no government funding or support from Muscular Dystrophy Associations of any kind, in a short period of time FSHD Global has invested over $9.1 million dollars, supporting 42 ongoing medical research grants across nine countries, and has seen a number of major medical breakthroughs as result.

The Foundation values strong governance in its commitment to execute world’s best practice, leadership and medical research among its field. Actively funding both basic epigenetics and therapeutic science. The Foundation in short is achieving momentum and incredible advances for clinical trials for new drugs to prevent muscle wasting.

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

 

What is FSHD?

Facioscapulohumeral muscular dystrophy (FSHD) is a genetic neuromuscular disease causing significant medical and health impacts on individuals, families and society. It is characterised by the progressive weakening and loss of skeletal muscles.

There is no known cure or effective treatment for FSHD.

The majority of people living with FSHD are diagnosed by the age of thirty, with an increasing proportion of children being diagnosed under the age of five. These early onset or infantile patients have more severe symptoms and added health complications.

FSHD is estimated to affect 1 in every 7,500 Australians, however, this number could be higher as FSHD is commonly misdiagnosed. These levels, make FSHD one of the most common forms of muscular dystrophy.

Despite the fact that FSHD affects around 3,200 Australians, in Australia there remains no government funding for FSHD research. Internationally the level of funding is minimal. As a result, FSHD research is estimated to lag behind research into other forms of muscular dystrophy by about twenty years.

The name of the disease comes from the areas of the body in which muscle deterioration is most commonly first observed – the face (facio), shoulders (scapulo) and upper arms (humeral). Weakness in the muscles of the eye (to open and close) and mouth (to smile, pucker and whistle) are also characteristic of FSHD in its early stages. It is common for a combination of these symptoms to form the basis of a doctor’s initial diagnosis.

The rate of progression of FSHD is variable, yet it tends to be slow in most cases. From the muscles of the face and upper body, it generally moves down to the abdominal and foot-extensor muscles. Signs of deterioration include “foot drop” (significant weakness in the movement of the ankle and toes), “scapular winging” (abnormal protrusion of the shoulder blade) and difficulty reaching above shoulder level due to progressive weakness in the stabiliser muscles of the shoulder.

Many people with FSHD may experience serious speech impediments caused by the weakening of facial muscles. More than 50% of patients experience high-frequency hearing loss, and may also develop abnormalities in the blood vessels at the back of the eye leading to vision problems.

A consensus about the cause of FSHD was reached in 2014. The symptoms of FSHD are caused by the production of a protein called DUX4. This protein plays a normal role in early foetal development, but it is highly toxic when produced in adult muscle tissue. In people without FSHD, the DUX4 gene is repressed and levels of DUX4 protein are low. For people with FSHD, the DUX4 gene is not repressed and the toxic protein is produced.

While many hereditary diseases are caused by a single genetic defect, the production of DUX4 and the development of FSHD can actually result from defects in two different chromosomes. The majority of sufferers (95%) have what is called FSHD 1 which is caused by a defect on Chromosome 4. The remainder (5%) have FSHD 2 which is caused by a defect on Chromosome 18.

This scientific complexity, coupled with the shortage of research funding, makes the search for a cure even more challenging.

THE FSHD 100% Model

The FSHD Global Research Foundation is a pure Australian not-for-profit organisation investing 100% of all tax deductible donations funding both basic epigenetics and therapeutic clinical trials, establishing drug developments to prevent muscle wasting. With a global footprint on science, our award winning structure relies on non-tax deductible revenue and sponsorships to support all overhead expenses.

We are proud of our culture and are committed to doing even more for research. Our Board of Directors, Basic Science, Sub-committees, Patrons, Ambassadors, staff and volunteers are vastly experienced in their respective fields and continue to make excellent contributions to the Foundation.

Executed by two separate bank accounts, 100% of all tax deductible donations fund global research, with the other non-tax deductible account funding operations. To keep this sustainable pure model, the Foundation took an innovative outlook and now seeks Corporate Australia to sponsor employees, ensuring costs are kept to a minimum. This ingenious structure has enabled the Foundation to grow in scale, speed and achievement.

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. The State Branches are run by volunteers many of whom are FSHD sufferers themselves.