International Friedreich’s Ataxia Collaboration

[show_avatar email=email hidden; JavaScript is required align=left avatar_size=87] This has to be the most ambitious, challenging idea I have ever participated in. At this time, we have 7 authors from 4 different countries who speak 3 different languages: Portuguese, Spanish and English. We are writing a novel featuring at least one character with FA with the hopes of generating money for research.

There are several drugs finally in trials or just out of them that may slow or halt the progression of FA! This is so incredible. A few years ago I was searching for a neurologist in the hopes they could tell me more about the latest findings than what I could find on my own. At this time there was no medicine or therapy, only at long last, after years of development and research, a definitive blood test stating whether or not a patient had it.

I wanted to know more. One of the potential doctors actually said to me, “Yep. Hasn’t changed in a hundred years. What do you want to know?”

Um. Nothing from you, thanks.

But now we are way beyond even that. There are possible drugs to halt the progression. Nothing like being told at 19 to eat right, exercise and keep a positive attitude. No matter what, this disease will slowly drag you down, but these things might slow the progress.

With a drug to give us the protein our bodies are missing, we could finally produce the energy we need to maintain the therapies and activities that will keep us strong and functioning. At least, that is the hope.

So, now the writers among us are gathering to fight a disease that knows no age limit, it kills from childhood to adulthood. It knows every race, every language, every gender and sexual preference. Lucky me, it’s the disease that believes in equality. LOL

Wish us luck!

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