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FA Patient Focused Drug Development Meeting - Your opportunity to tell the FDA what is important to you in finding a treatment for Friedreich’s Ataxia

Drug Development Meeting 4

What is a Patient Focused Drug Development Meeting?

In 2015 the Food and Drug Administration (FDA) began a new initiative to expand the way it looks at therapies, specifically seeking input from patients. The agency wanted to hear directly from the community about patients’ needs, rather than assuming that internal FDA scientists understood every disease and patient population. Thus, it launched the Patient-Focused Drug Development (PFDD) Initiative, a series of public meetings led by the FDA and designed to systematically gather input from patients regarding their experience of living with specific diseases, the preferred impact of potential treatments, and the benefit/risk analysis when considering a new targeted medication.. The FDA scheduled the initial 20 meetings, many of which have taken place and are considered very successful. In order to reduce their administrative burden however, the FDA, has now moved to a new model where such meetings are led by patients and patient groups, with the FDA attending and participating. FA has been selected to be one of the disease areas to host such a meeting in 2017.

2017 Move Your Way for Rare Disease Day

MYW2017 blog

Rare Disease Day aims to raise awareness around the world of rare diseases and their impact on patients' lives. To join these efforts, let's tell the world about FA! Here's an updated take on the Move Your Way for Rare Disease Day Campaign...

We're asking the FA community to submit a short (30 second) video clip showing how you move your way living with Friedreich's Ataxia

Pictures of HOPE

RareBirdPhoto1The young lady in these images is my 10 year old friend Anna. I really hope that you all have an Anna in your life. I have known Anna for a few years now and there are a lot of adjectives I could use to describe her. I think the best one, the all inclusive one, is kind. Her heart is kind, her actions are kind, and she emanates kindness, just having her around makes you feel good. Last year Anna was .diagnosed with Friedreich's Ataxia (FA), a rare and degenerative disorder. The news of such a diagnosis would bring anyone to their knees and pray for hope.

I wanted to help and provide hope for Anna and others suffering from FA and I wanted others to help too. I told people "Let’s do something good, together. I will provide the art, you can provide the kindness. If Anna can plant kindness into our world every day, so can we." 

Knock Out FA

KnockoutFAThe first annual Knock Out FA event was held on October 16th at Detweiller Park in Peoria, IL. Knock Out FA was a very entertaining KnockerBall soccer tournament where teams of 8 competed in a bracket style tournament trying to advance to the next round. For every goal scored, each team member was awarded a raffle ticket they could place into a number of amazing raffle drawings! The final winning team was awarded a pair of Zeal sunglasses for each member of the team. 

"Ghouls Night Out"

GhoulsNightOut“Ghouls Night Out” was the theme for this year’s Piccadilly Gala and Ladies Night Out in Clinton, Missouri. The annual event raises funds to support the downtown decorations, landscapes, etc. Each year, a charity or cause is selected to benefit as well, and this year, FARA was chosen. On Tuesday, October 11, over 300 women gathered to raise money in a big way. Thirteen pumpkins were decorated for the evenings “Pumpkin Palooza” and auctioned off. With the city’s generous women, these 13 pumpkins raised $1,800 for FARA in their efforts to find a cure. 


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