2024-03-16T15:20:42-07:00 2023-12-31 990EZ 2023-01-01 931451051 SCA27b Ataxia Foundation SCA2 6159000234 PO Box 10816 Murfreesboro TN 37129 Mary Hogan Executive Director 6159000234 2024-03-14 Mary Hogan 999009999 1 0 11 1 AAL2 2023 2023-04-26 12:10:37Z X X X sca27b.org X X 5901 X 5901 0 0 0 0 0 0 0 0 0 0 0 0 0 0 5901 0 0 0 0 0 64 64 128 5773 0 -750 5023 0 5023 0 0 0 0 0 5023 0 0 0 5023 Our mission is to improve the quality of life of individuals and families affected by SCA27b while promoting research and treatments for Ataxia. We bring awareness, education, and resources to individuals and families affected by SCA27b. The foundation actively connects patients to Ataxia experts and researchers to accelerate solutions for SCA27b. 1) June 24, 2023: We hosted a SCA27B event for 80 people in Northern Virginia that included blood draws for genetic research on familial SCAB research through the University of Michigan, speech tests for SCA27B research through Rendenlab (Melbourne), neurology and genetic consults with an on-site neurologist and geneticist, patient support discussions, and filming for collaborative educational videos with Bill Nye, Structure Films, and the National Ataxia Foundation. The host site, food, and lodging were provided by participating members and researchers. The only expense that was billed to the SCA27b Ataxia Foundation was the rental of two large outdoor tents and chairs for 70 people. This rental cost $750. 0 750 2) June 2023: We developed and launched our website at sca27b.org just prior to obtaining our EIN with the IRS and nonprofit status with the state of Tennessee. The effort and costs of establishing this website were absorbed by the executive director and not charged to the foundation. 0 0 3) FEB 14, 2023: We formed a private discussion group on FaceBook one month after the genetic discovery of SCA27B. It is for individuals and families affected by SCA27B and we also have included two ataxia experts in the group to answer neurologic and genetic questions. There are 70 members in this group. 0 0 4) Our foundation has been providing free online support group meetings, Facebook SCA27b group discussions, consult on requesting genetic testing, informative emails to patients and their healthcare providers, phone conversations with patients and healthcare providers with questions about SCA27B, and referrals to ataxia centers, research studies and clinical trials. This has benefitted approximately 100 individuals. 0 0 5) Participated in collaborative grant writing for SCA27B research with research institutions, academic institutions, and other ataxia foundations (National Ataxia Foundation and Ataxia Global Initiative). These grants, if awarded, would benefit the 1000+ individuals currently identified as having SCA27B. 0 0 6) We post all current research publications about SCA27B on our website to serve as a reference to patients and healthcare providers. We also post webinars about SCA27B or related symptoms, treatments, etc. on the website. Our website is accessed around the world by patients, healthcare providers, and researchers of this very rare and newly identified neurodegenerative disease. 0 0 750 Mary Hogan Executive Director 25 0 0 0 Jennifer Austin President of the Board of Directors 10 0 0 0 Eric Legg board member 2 0 0 0 Jack Barile board member 2 0 0 0 Corinna Hogan Secretary 2 0 0 0 Andy Nye Facebook discussion group admin 4 0 0 0 Sarah Ying medical advisor 2 0 0 0 Margit Burmeister genetics advisor 2 0 0 0 Bill Nye scientific advisor 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 TN Mary Hogan PO Box 10816 Murfreesboro TN 37129 6159000234 0 0 0 0 0 0 0 0 0 0 0 NONE NONE 1 X 0 0 0 0 5901 5901 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 5901 5901 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 5901 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 5901 5901 X Form 990-EZ, Part I, Line 16 Description;Amount^Monthly checking account fees;64^Total;64^ Form 990-EZ, Part I, Line 20 $750 was spent for tents at the event we hosted for SCA27B patients and researchers on June 24, 2023.