FSHD Global Research Foundation Limited
View contact informationDedicated to treating and curing a genetic muscle-wasting disease, this organization funds research, biotech innovations, and advocacy. They aim to enhance muscle wellness and quality of life for affected individuals.
Sydney, NSW
ABN: 79128037614
Founded on ,
registered as a charity on the
ACNC Charity Register
since .
How This Charity Supports the Community
FSHD Global Research Foundation Limited is an Australian not-for-profit organisation dedicated to combating Facioscapulohumeral Muscular Dystrophy (FSHD), a complex genetic muscle wasting disease that progressively weakens muscles in both adults and children. The Foundation plays a pivotal role in funding medical research, supporting biotech innovation, and advocating for improved diagnostic and therapeutic infrastructure to enhance the lives of those affected by FSHD.
Mission and Vision
The Foundation’s mission is to find effective treatments and ultimately a cure for FSHD while improving muscle regeneration, function, and wellness. Their vision is a world where FSHD no longer diminishes the quality of life, and where all people suffering from muscle weakness due to neuromuscular disorders or ageing benefit from advances in muscle health.
Main Objectives
- Funding cutting-edge medical research to fast-track disease-modifying therapies and clinical trials.
- Investing in muscle wellness and technology to slow disease progression and improve quality of life.
- Advocating for patients and medical professionals to build diagnostic and treatment infrastructure and ensure access to future therapies.
- Supporting biotechnology companies developing novel treatments for FSHD and musculoskeletal health.
Benefiting Groups
- Individuals and families living with FSHD, including children and adults affected by muscle weakness.
- Healthcare providers and researchers working to understand and treat FSHD.
- The broader community impacted by muscle degeneration from various causes, benefiting from muscle wellness innovations.
Services and Activities
- Funding global medical research grants and supporting Australian-based projects.
- Operating a patient-led registry called Cure FSHD, which helps Australians living with FSHD become ‘trial ready’ for clinical studies.
- Organising signature fundraising events such as the Sydney Chocolate Ball to raise awareness and funds.
- Providing saliva research testing for individuals and families to aid diagnosis and research participation.
- Engaging volunteers and corporate partners to support advocacy, fundraising, and community outreach.
- Lobbying government and health bodies to improve policies and access to therapies for people with FSHD.
Through these comprehensive efforts, FSHD Global Research Foundation Limited is a leading force in giving life to muscles and hope to those affected by this challenging condition.
Support FSHD Global Research Foundation Limited Through Donations
Support the charity’s vital work by making a donation. Every contribution helps them continue their mission.
Their official Australian Business Number (ABN) is 79128037614 for your reference.
See FAQs about donating to FSHD Global Research Foundation Limited:
How can I donate to FSHD Global Research Foundation?
They deeply appreciate your generosity and commitment to helping them accelerate research and support individuals affected by FSHD. If you would like to learn more about the impact of your donation, have any questions about their work, or wish to explore alternative ways to give, you can contact their Fundraising and Partnerships Manager, Dominic Monckton, directly at dominic@fshdglobal.org or call him at 0480 758 792. They value your support and look forward to connecting with you!
What is the purpose of Dan's streetwear brand Agile Earl?
Dan, a long-time friend of FSHD Global and founder of Agile Earl, has launched a purpose-driven streetwear brand that donates 100% of profits to FSHD Global. This initiative aims to raise both awareness and critical funds for a cure. By purchasing the merchandise, you support their mission to beat FSHD together.
How can I participate in the Orange Slice Selfie campaign?
To participate in the Orange Slice Selfie campaign, you can purchase merchandise from Agile Earl, slice an orange, smile, and snap a photo showing your support. Be sure to share the photo on social media using the hashtags #WorldFSHDDay and #fshdglobal to raise awareness for FSHD.
What is the significance of the FSHD Global Research Awareness Ribbon?
The orange awareness ribbon is symbolic for international FSHD awareness programs, including World FSHD Day held each year on 20 June. By purchasing and wearing the ribbon, you can help them raise awareness, with proceeds supporting FSHD Global Research Foundation in their quest for treatments and a cure. You are encouraged to share a photo with your FSHD Global Orange Ribbon on social media using the hashtag #fshdglobal.
How can I purchase an FSHD awareness ribbon?
You can purchase the FSHD awareness ribbon for $10 each, with international shipping fees applicable for orders outside Australia. To buy a ribbon, select the quantity and location on their website, then submit your order. Not only will wearing the ribbon help raise awareness, but the proceeds will also aid in their research efforts.
Volunteering Opportunities to Make a Difference in Sydeny
The FSHD Global Research Foundation Limited is a small, dynamic organisation driven by the passionate efforts of its dedicated team and volunteers. They play a crucial role in advancing the Foundation’s mission to find treatments and a cure for FSHD. With most volunteering opportunities based in Sydney, the Foundation provides various ways to contribute beyond monetary donations.
Event volunteering is a key aspect, with numerous fundraising events throughout the year, offering unique experiences. Volunteers can also lend their specialised skills on a part-time or “as required” basis in areas such as IT support, PR, media, marketing, and more.
Additionally, the Foundation offers internship opportunities, welcoming those eager to learn and contribute to internal administration, event organisation, marketing, and communications. Volunteers become an integral part of the FSHD Global’s committed community, making a meaningful impact in the journey towards a cure.
Visit FSHD Global Research Foundation Limited’s official website to explore volunteering opportunities and how you can get involved.
Get in touch with this charity for details, support or collaboration.
Suite 3, Level 38, 259 George Street
Sydney NSW 2000
Australia
Source of information and last update date:
The information on this profile has been sourced from the ACNC Registered Charities dataset and the organisation’s own website.
The last review was completed on
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