September 2022 eNews
A Note from NAF's Executive Director
Hi Everyone!

I am pumped up this morning! We have just wrapped up our two day live meeting with the principal investigators and clinical coordinators of the CRC-SCA natural history study. The pharma company members of our NAF Drug Development Collaborative were also present. This is the first time this group has been able to meet in person since 2019, and first off, it was just great to be together! Deep discussions were held regarding the current status of the study (patient recruitment, follow-up, study protocols, etc.) and how it can be even more impactful going forward. Natural history data is a critical component of drug development and regulatory submissions, and we talked about how to work most effectively with FDA going forward. While there is much work to do, the energy in the room and the unquestionable commitment to doing what’s right for the patient is contagious. Thank you to all who traveled to the Twin Cities for this important gathering. And now we turn our attention to our annual Hill Day next week where Ataxia advocates from around the country will be holding meetings with members of congress and their aides, pushing hard for increased funding for Ataxia research and other causes meaningful to our community.

So much going on at NAF, and it’s time to get back to work!

Andrew
NAF Updates
IAAD is September 25th!
International Ataxia Awareness Day (IAAD) is on September 25th every year. It is a coordinated effort from individuals and Ataxia organizations to help shed light on Ataxia. We’re starting an “Ask Me About Ataxia” movement! Post a photo of yourself or your group on September 25th with a sign that says, “Ask Me About Ataxia.” Use #IAAD. Our goal is to get a conversation about Ataxia trending on social media across the globe. Join us!
4th Annual Hill Day Is Next Week
On Wednesday, September 21st, over 80 Ataxia advocates will meet with their Congressional Members to raise awareness about Ataxia, research funding needed, and ways to expedite treatments. Congressional Members need to hear from the Ataxia community to fully understand what Ataxia is and what legislative action is needed! Thank you to all of the volunteers who are helping with these efforts!
NAF Research Grant LOI Deadlines Approaching
Attention Ataxia researchers! It's that time of year again! NAF-funded research grant LOIs and applications are due soon. Check out the NAF website for deadline information and a full list of grants we offer. You can also reach out to Beth Bowerman, Research Services Coordinator at [email protected] with any questions you have. 
2023 Annual Ataxia Conference Travel Grant Applications Available
Looking to join us in Las Vegas to enjoy the 2023 Annual Ataxia Conference? We want everyone to have an opportunity to experience AAC. A limited number of travel grants for the in-person event and registration scholarships for the virtual event are available to low-income individuals with Ataxia. Apply today for a travel grant or registration scholarship!
Meet a Member
Reminds Me How Blessed I Am!
After 27 years of teaching Special Education and raising his family, Bud Manley fell and broke his hip. He spent several years of searching with doctors for why he wasn't healing properly. He was given the diagnosis of Spinocerebellar Ataxia. He shares with us in this months member story how truly blessed he is.
Ataxia Webinars
Ask the Expert is Tuesday, September 21st
NAF invites an expert to answer your questions about Ataxia every other month. For the 2022 sessions, Dr. Susan Perlman of UCLA Medical Center in Los Angeles is joining us. These are informal discussion-style webinars without a set topic. You will have the opportunity to ask any questions related to Ataxia. Don’t have a question? Join us and listen in on the 21st of September at 1:00 PM CDT.
Join us in October for Chair Yoga
Natalie Marnica will be leading a chair yoga session for people affected by Ataxia. This session will guide you through a simple sit and stand chair yoga to help reduce aches, muscles tension and improve mood. This class is accessible for people in chairs and wheelchairs and no previous experience is necessary to attend.
New SCAsource Article
Snapshot: What is Immunofluorescence?

Immunofluorescence is a common laboratory technique used to see proteins in a sample through microscopy. It is an important tool for studying biological processes at the cellular level. Most importantly, it causes minimal disturbance to the shape and the surroundings of the protein of interest. In the latest SCAsource article, Christina (Yi) Peng explains what immunofluorescence is and how it works. 
Do you want to receive SCAsource’s research news articles as soon as they are published? Join the SCAsource mailing list to be the first to know when a new article is available. You will receive approximately 2 articles per month from us.
Research Recruitment
Research Study for SCA3 Announced

STRIDES study, sponsored by Seelos Therapeutics, is recruiting participants for a clinical trial to assess the safety and efficacy of SLS-005, an investigational new drug to treat Spinocerebellar Ataxia. STRIDES is a phase 2b/3 study planning to enroll up to 245 participants between the ages of 18 and 75 who have SCA3. Read the study flyer for full details and eligibility criteria below.
Below you will find clinical trials and research opportunities for those with various types of Ataxia. These trials have been approved and monitored by an Institutional Review Board (IRB) to make sure the risks are as low as possible and are worth any potential benefits for the participant and/or Ataxia research field.
Announcements:
We want to hear from you!
Submit your story or ideas for newsletter content to [email protected].
Find an Ataxia Support Group Meeting

Many of our Support Groups are holding virtual meetings. We welcome you to join one (even if it isn't in your area). You can find a list of all virtual meetings on our events page at ataxia.org/events.

Find out what our support groups have been up to here!