Over $85,000 Raised in a Stunning Display of Community Support for Lend Us Some Muscle
FARA Blog
by Victoria Rogan
1w ago
In May this year, more than $85,000 was raised through an incredible display of community support. With over fifty fundraising campaigns running across Australia, individuals and teams of up to a dozen people walked, swam, ran, stretched, rode, lifted, and flexed their way to this amazing total. Motivated by matching donations from Larimar Therapeutics ($7,500) and our fantastic friends at the Tristan Allamby Research Fund ($20,000), both returning champions and many new LUSM supporters joined in on the fun.  Social media was ablaze with the exploits of participants, sharing their inspiri ..read more
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Watch all presentations from our recent Patient and Families Information Forum
FARA Blog
by Victoria Rogan
1M ago
Introduction + Associate Professor Ian Harding Professor Ian Harding has recently relocated his laboratory to the QIMR Berghofer Institute from Monash University. In Brisbane he is continuing his work in understanding brain & spinal cord changes in FA. Central to his work to date is that these changes can be measured using imaging and reveals that the changes occur not only in 'primary' areas of the disease, but also impact brain connections & communication. Professor Harding's talk further explores the current and possible future applications of imaging and its importance for potentia ..read more
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Biogen Confirm Plans for Australian SKYCLARYS®
FARA Blog
by Victoria Rogan
1M ago
First Therapy to Treat Friedreich Ataxia You will be aware that we have been in regular communication with Biogen since their acquisition of the Reata Pharmaceuticals FA treatment SKYCLARYS® . We are delighted to be able to advise that Biogen Australia has confirmed that they plan to make regulatory and reimbursement submissions this year and will keep us updated as and when information is made available. They hope we are reassured by the progress already made in the USA and Europe and have their commitment to move as quickly as processes allow in Australia. This follows the news earlier this ..read more
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Chant Family Bequest
FARA Blog
by Victoria Rogan
1M ago
In the most recent round of Research Grants, we were fortunate to be able to co-sponsor the work of Hyunmin Cho, PhD at Stanford University in California. This grant was made possible through the generosity of the Chant Family Bequest. In July 2021, Pamela Chant of Perth passed away leaving a significant bequest to fara Australia and two other charities. Mrs Chant's Will directed that her bequest to fara be used for the purpose of conducting Friedreich Ataxia Research. Mrs Chant was motivated to make this extraordinarily generous bequest as her three late children, Adam, Glen and Jacqui all li ..read more
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Biogen to Acquire Reata Pharmaceuticals
FARA Blog
by Victoria Rogan
1M ago
Many of you will have seen the news from last weekend announcing that Biogen has entered an agreement for the proposed acquisition of Reata Pharmaceuticals. The impact of this on the plans for the distribution of SKYCLARYS both in the US and internationally are of particular interest to everyone in our community. Right up until this week, we have been in ongoing discussions with Reata and along with FARA in the United States, have now expanded our focus to the Biogen team. Whilst at this early stage we are unsure of the impact of the acquisition, we are encouraged by statements from Biogen tha ..read more
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Fara co-funds new Research Programs & extended other grants into their second years
FARA Blog
by Victoria Rogan
1M ago
This investment of funds contributed by our community totalled $245,000 and extended from Monash University and the University of Wollongong to the University of Rochester in New York, the University of Florida and CNRS-CEA-Université Paris-Saclay in France. This takes fara supported research grants to more than $1,000,000 over the last five years thanks to the amazing generosity of our community! Our thanks and gratitude to every contributor and supporter of fara who have made this investment possible. Your kindness is progressing the search for treatments and one day a cure for F ..read more
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Omaveloxolone Granted US Food & Drug Administration Regulatory Approval
FARA Blog
by Victoria Rogan
1M ago
This morning (Australian Time) Friedreich Ataxia treatment SKYCLARYS (Omaveloxolone) from Reata Pharmaceuticals was granted US Food & Drug Administration (FDA) regulatory approval. Commercial manufacturing and distribution can now take place in the United States.  Click to Read Reata's Market Release What this means for Australia Whilst Omaveloxolone (Omav) has been grated FDA approval in the United States, as with all pharmaceuticals, this does not extend to approval for distribution and sale of Omav in Australia. This requires approval by the Australian Therapeutic Goods Administrat ..read more
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New Fundraising Partnership with PanAmerican Seed
FARA Blog
by Victoria Rogan
1M ago
Each year, PanAmerican Seed donates a percentage of its global Beacon® Impatiens flower sales to less-widely known charitable organisations. This year they have selected fara Australia and FARA US as their beneficiaries. Click the link below to see a list of stockists in Australia. Stockist list ..read more
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Deciding How to Educate Your Special Needs Child
FARA Blog
by Sam Jackson
2y ago
by Gwen Payne One of the most important decisions that any parent makes is how to educate their child. This is especially true of parents with special needs children, who often require specialized curriculums and alternative learning environments. Whether your child’s special need is physical, developmental, behavioral, or sensory (visual or hearing impairment), it’s vital that you weigh all of your educational options to determine which one is right for your child. Here are some things you should consider when making decisions about your child’s educational needs. Public or Private School? B ..read more
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Counting the stairs!
FARA Blog
by Sherelle Fyfe
4y ago
My name is Caitlin Maynard, and I live in Sydney, NSW.  I was born in Somerset, England in 1995, and have lived all over the world since then. I moved to Sydney in 2018 with my parents and boyfriend and immediately loved how friendly and accessible it is here. I was diagnosed with Friedreich’s ataxia in 2013, after showing symptoms for a little over two years. The appointment where I was told my diagnosis was the first time me and my family had heard of FA. I was diagnosed a few months after I graduated from high school, and one month after I started university. The shock of being diagnos ..read more
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