Tyler & Me  Rileys Make A Wish trip

We are truly in an era of progress with respect to FA. Watching the search for a cure can be very frustrating, and it can sometimes seem like the cure may never really arrive, but the last few years have shown that we WILL find a treatment and a cure! As a result of funding from FARA, NAF, MDA, and others, the disorder has become much better understood and several drugs are now in different stages of trials. Understanding the different stages of research is very important to the ataxian and their families in order to avoid frustration and over-optimism when reading of new drugs under study.

Instead of trying to describe the research activities here, we'll provide a few links to other sites that discuss the great progress that is now being made. These sites will open in a new browser window.

If your child has ataxia we strongly encourage you to enroll in the appropriate patient registries. A list of registries and how to enroll can be found at the NAF Patient Registry and the FARA Patient Registry. The registries are used by FARA, NAF, and other organizations to collect basic information on indiviudals with ataxia and to facilitate clinical trials, getting us all closer to treatments. Many of us have already helped further the effort by taking part in these clinical trials, and the pace of the progress right now means that they are always looking for more volunteers, so please sign up!

Also, if your child is using or is planning to use any off-label medications, please read our guides for off-label drug use.

And lastly, in the worst of events for a parent, if your child passes on there is also a way for them to continue to contribute to the search for a treatment. Patients with FA and their family members are invited to inquire about autopsy and tissue donation for research. The goal is to learn as much as possible about FA through these donations and apply the new knowledge to diagnosis, treatment, and care of other FAers.


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