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).
SIGN THE PETITION
Working with your doctor to obtain a diagnosis can be difficult, especially with a rare disease. Medical history, family history, and a neurological evaluation are used to diagnose Ataxia. Various blood tests may also be used to rule out other disorders. Your doctor may recommend genetic testing if a hereditary Read More…
Author: Dana Mauro, NAF Support Group Leader Hi, let’s talk about Ataxia. When my husband, John, was diagnosed with Ataxia, we were desperate for information. We scoured the internet looking for anything on Ataxia, but all too often what we found was inaccurate and just caused us more worry. We wanted Read More…
We’ve been talking a lot lately about Ataxia clinical trials. But what is a clinical trial? Should you sign up to participate when there is one available for your type of Ataxia? What happens during a clinical trial? Learn everything that you need to know with this webinar: Clinical Trials Read More…
Author: Joel Sutherland, NAF Development Director Only 26 spots remain in the 2020 Joint Mission Bataan to Cure Ataxia campaign. Would you like to join us? To refresh your memory, this campaign, that we call JMB, is an expansion of last years’ effort led by North Carolina resident, Mike De Rosa and Read More…
Giving Tuesday is a global day of giving that is recognized on the Tuesday after Thanksgiving each year, usually through social media efforts. To celebrate, people donate time, talents, and/or resources to causes that are important to them. This year, #GivingTuesday is on December 3, 2019. At NAF, Giving Tuesday Read More…
Photo: A few members got together for a Preholiday Fun Lunch Saturday, November 16 at the Fish Company, Bass Pro in Northfield, Denver. Author: Charlotte DePew, NAF Support Group Leader The quarterly Denver Ataxia Support Group met at Swedish Medical Center on Saturday, October 19, 2019. Because of new hospital Read More…
Guest Authors: Sheng-Han Kuo MD, Chen-Ya Yang, MD, MPH, and Geraldine Yu, PT, DPTTechnical Support: Tiffany Chen BS, Johns Hopkins University Ataxia is a neurologic disorder that affects people across all ages. People living with Ataxia may experience problems including incoordination of movement, slurred speech, poor balance, and gait abnormalities. Read More…
Facebook fundraisers make a big difference for us at NAF. More than $200,000 has been raised because people like you took the time to support our cause. Thank you so much! Your efforts will directly impact the Ataxia community. The funds that you raise help us offer Ataxia research grants, Read More…
Author: Kelsey Trace, NAF Research Associate It was an exciting couple of days in Minnesota when prominent Ataxia clinical researchers and research coordinators met in Minneapolis in September for the annual Katie Campbell Clinical Trial Readiness Conference. This conference focuses on the work of the Clinical Research Consortium for the Read More…
Author: Lori Shogren, Community Program and Services Director NAF partnered with FARA and the EveryLife Foundation for Rare Diseases to bring International Ataxia Awareness Day to Capitol Hill. United Against Ataxia Hill Day happened on September 25, 2019. We are so grateful for all the support in planning the day and will cherish the relationships that were built Read More…
