• Lata Moss

Launching the FSHD Saliva Research Test Kit & Medical Education Portal

Over the past 12 months, the FSHD Global Research Foundation (FSHD Global) has focused on its mission to find a cure for Facioscapulohumeral muscular dystrophy (FSHD) and increase muscle wellness and muscle technology.

FSHD Global has always been an innovator and a disruptor. Since its establishment having donated 100% of all tax-deductible dollars to fund current and future medical research grants it has successfully fast tracked global research. The Foundation is now launching another innovative milestone for the field of FSHD with the new Portal, bridging the gap from archaic diagnostic methods (which commonly causes misdiagnoses) to offering a new Saliva Research Test kit delivered to your home. The Portal brings education, assistance and knowledge to people and their families in their own home.

After a decade of lobbying the Australian government for an FSHD muscular dystrophy registry, last year the Foundation decided to take matters into its own hands and create a Portal which connects research, diagnostics, and patients establishing the FSHD Global Registry and FSHD Clinical Trial Readiness Program.

The purpose of the FSHD Medical Education Portal is to:

  • roll out an FSHD Saliva Research Testing program nationwide to ascertain disease prevalence across Australia

  • help educate individuals and their families living with FSHD on new and improved diagnostic technologies

  • provide an accessible way for patients to test their DNA relating to FSHD, with testing kits delivered straight to their home

  • assist FSHD patients to test if this hereditary disease is in their family tree share global research publications and global medical breakthroughs

  • connect people with professional health services and assistance networks who are experienced with the disease

  • actively keep the FSHD community informed on current and proposed FSHD clinical trials, with the opportunity to partake in future clinical trials

  • create a FSHD Global Registry to connect diagnostic data which will aid medical research and link the community to the FSHD Clinical Trial Readiness Program

“While the FSHD Global Research Foundation focuses on finding treatments and an ultimate cure, this Portal centres on establishing a FSHD Registry, collating information on disease evolution and connecting our community with diagnostic platforms and furthermore clinical trial readiness programs” says Natalie Cooney, Chairperson of the Foundation.

Natalie continues; “Members of the Portal will be encouraged to order a complimentary FSHD Saliva Research Test sent to their home, to better understand their own DNA sequencing relating to FSHD. This test is available to anyone around the world, and is a pre-requisite for joining the FSHD Medical Research & Clinical Trial Readiness Program”.

The Foundation acts as a conduit connecting participants directly with the testing laboratory, as such the FSHD Global Research Foundation will not share any personal information communicated through this Portal at any time to a third party. Should a participant wish to upload their FSHD Saliva Research Test results to the Portal to assist with research, they can do so with the click of a button on the highly secure HIPAA compliant Portal.

“While the Foundation continues to fund the world’s best medical research, we are now able to create a FSHD Registry and Clinical Trial Readiness Program for a community desperate for treatments and a cure.”

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