In order for you to understand what we're about, you must first understand us. To do that you need to open your mind, and think out of the box.
We ARE ataxia. Everyone involved with this organization either has ataxia, has family with it, a close friend, or a medical professional involving research. We are PASSIONATE about what we want to do.
Our idea is that almost all ataxias are different "flavors" of the same thing. The difference is the onset time, rate of progression, severity, etc. There may be different causes, but the result is the same. Some are more devastating than others, involving different complications, but none are a picnic.
We know what it's like to be thrown into this world of ataxia. We know the confusion and frustration of being blindsided, and not having a clue where to go for information and support. We know about not getting answers because we don't even know the questions. The fear, depression, and anxiety are something we know very well. We all went through it.
Whether you are a veteran, newly diagnosed, or simply looking at what might be going on, we can all help each other. You are not crazy, you are not imagining things, and you don't have to go through it by yourself.
It is important to know that there is life with ataxia. You don't need to hide and become reclusive. You don't need to be embarrassed or feel odd. People may whisper, and people may point and judge. That is on them, and will probably not change.
It is how you react. Remember sticks and stones...I'm rubber, you're glue? It applies well here.
The Fight Ataxia Project has 3 main goals
EDUCATE, ADVOCATE, and MOTIVATE
We are going to educate not only the general public about ataxia which will lead to more understanding and acceptance, but we need to educate the ataxians themselves to make sure they have correct information to help better understand their own situation.
We will advocate to our ability to help find resources, and provide support and encouragement for those that are willing to take the step and put things in motion. This also goes for families, friends, and care givers. The devastation of ataxia reaches far beyond the patient.
We will get people motivated to live life to their capacity. Too much focus is on what was, and not enough on what can or will be. Life is not over, it's just way different, and people have to think differently.
This will be accomplished through a strong online presence (website, social networking), reaching out to the medical community, holding fundraising events thruout the year, and networking and collaborating with other. organizations.
ATTITUDE IS EVERYTHING !