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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Written by Celeste Suart, PhDEdited by Eder Xhako A survey conducted by French researchers examines how people impacted by Spinocerebellar Ataxia view different reproductive health options and sharing information with family members about genetic conditions. Starting a family is a big decision. There are a lot of things to consider Read More…
Written by Alexandra Putka Edited by Dr Hannah K Shorrock Scientists characterize SCA1, 2, 3, & 6 disease progression, finding that symptoms change most rapidly in the first 10 years of the disease. Designing clinical trials for rare diseases such as spinocerebellar ataxias (SCAs) requires us to know the timeline Read More…
Written by Juan MatoEdited by Hayley McLoughlin, PhD German research team uses specialized imaging technology to measure neuropathy in SCA3 patients. The Unexplored Depths of Peripheral Neuropathy in SCA3 Spinocerebellar Ataxia Type 3 (SCA3) is an inherited neurodegenerative disease that affects balance, coordination, speech, and overall mobility. However, did you Read More…
Written by Kaitlyn Neuman Edited by Sarah Donofrio Lessons learned from Friedreich’s Ataxia patients and families: Gene therapy, trial participation, and managing expectations. What is Friedreich’s Ataxia? Friedreich’s Ataxia (FA) is a rare genetic childhood condition with a variety of symptoms, including trouble with balance, coordination, and a progressive loss Read More…
A person’s voice is a unique and identifying trait. From one aisle in the grocery store, a familiar friend can be recognized by the sound of their voice. Your friends or family can tell if you’re near just by hearing your laugh. People sound different because of the shape and Read More…
Have you ever thought about why doctors tell us to eat protein-rich food? Why eating proteins is so important for our health and wellbeing? Well, it is because of what they consist of and how important proteins are to maintain our body functions under control. Amino acids are organic chemicals Read More…
Written by Tala Ortiz Edited by Dr. Larissa Nitschke Repeat-associated non-AUG (RAN) translation in CAG repeat expansion diseases is toxic to cells and causes them to die. The Jain group found that RAN proteins and expanded RNA can be found in the same location in cells and interfere with essential Read More…
If you’ve ever felt shaky when speaking in public or after drinking too much coffee, then you’ve likely experienced tremor. Tremor is an involuntary, rhythmic shaking of parts of the body, such as the hands or the head. Everyone experiences a normal, physiological tremor at a certain level, which is Read More…
Written by Asmer Aliyeva Edited by Dr. Hannah K Shorrock Antisense Oligonucleotide (ASO) treatment improves Purkinje neuron function regulated by potassium channels and highlights altered brain connectivity in movement disruption in SCA3. Understanding which cell types are important for disease onset is vital for therapy development and treatment options for Read More…
Dystonia is a disorder that affects the way a person moves. Specifically, people with dystonia have involuntary muscle contractions, which can cause abnormal twisting postures. Dystonia can affect muscles anywhere in the body, including the face, neck, torso, and limbs. The impact of dystonia can vary greatly across individuals. Some Read More…
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