NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
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This past January I woke up with balance issues. Within a week I was using a cane. In June, my neurologist diagnosed me as having sensory ataxia. My condition seems to have progressed rather rapidly! During the past seven months, I have struggled when standing and walking. When I sit Read More…
Guest Author: Karen Winston Exploring the great outdoors has never been more accessible! Karen shares a fantastic opportunity that’s perfect for those eager to immerse themselves in nature. Learn about the free all-terrain wheelchair program available in many state parks across the United States. These specially designed Action Trackchairs are Read More…
Guest Author: Ellie Martin Ellie, who has Cerebellar Ataxia, tried out the BoBo Core Training Balance Board and shared her experience. The interactive balance board pairs with a versatile app to offer an experience that is different from traditional exercise equipment. Check out her review of this unique fitness tool… Read More…
In medical school, one of my professors told me I had a gait disorder. I told him, “No I don’t!” Well, he was right of course. 20 years or so later I found myself unable to run, and gradually noticed weakness in my quads and legs, and eventually a very Read More…
Guest Author: Linda Chase, Able Hire Owning a business is a dream that many people have, including those with disabilities. While the journey may have its challenges, there are plenty of resources and strategies to help make this dream a reality. This blog post will explore practical tips and inspiring Read More…
Session focused on the importance of funding research and approving new treatments for rare diseases, especially those with no FDA-approved treatment options like Spinocerebellar Ataxia (SCA) Minneapolis, MN (November 19, 2024) – Today the National Ataxia Foundation (NAF) partnered with members of Congress to host an informational meeting for legislators, Read More…
Hi I am a 62-year-old Indian male living in New Delhi, India. My discovery of Ataxia was quite by accident. I suffer from Essential Tremors and the doctor suggested a gene test about 15 years back. The SCA 12 gene was dominant, but since it was more an ET diagnosis, Read More…
I have Multiple Sclerosis and Ataxia affects my walking. I never thought of Ataxia as a separate thing, but a friend has it as well. The neurologist at the hospital notice it as well as my MS Specialist. When Were You Diagnosed? Which Type (If Known)? 2021. Not sure what Read More…
Getting a new medicine approved for use in the United States involves a detailed process overseen by the U.S. Food and Drug Administration (FDA). This process is called the New Drug Application (NDA). NDAs are crucial for making sure medicines are safe and effective before they’re available to the public. Read More…
A Life of Resilience: Kamal Ansari’s Journey with Ataxia Kamal Ansari gazed out of the window, the sun casting long shadows over his garden. At 72, he had seen more than most could imagine, and his journey had been one of perseverance and resilience. Born in Pakistan, Kamal had served Read More…
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