ATAXIA - Key Persons
Job Titles:
- Research Services Associate
Aimee has an MA in English Studies and brings a background in professional writing, editing and adult education to her role as Research Services Assistant. As a member of the Research team, she manages NAF's grants program and provides administrative and logistical support across all our research areas. You can find her planning in-person events, coordinating webinars, handling departmental communications, and answering questions. Aimee is inspired by the collaborative nature of the staff at NAF, Ataxia clinicians and researchers, and the Ataxia community. She is passionate about utilizing these partnerships to support patients and families while working towards treatments and a cure.
Andrew has an MBA in Marketing and a Master's in International Studies and has more than 15 years of nonprofit leadership experience after a 20-year business career. He leads NAF's strategy, oversees staff, and works closely with the Board of Directors. Having joined NAF in 2019, Andrew is continually motivated by the resiliency and caring of the ataxia community. He is honored to work with such a talented team as we get ever closer to treatments and an eventual cure for Ataxia.
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Job Titles:
- Patient Engagement Manager
Celeste earned her PhD in biochemistry at McMaster University, where her research focused on Ataxia, science communication, and adult education. She is the co-founder of SCAsource, a knowledge translation website that makes plain language summaries of ataxia research articles. As Patient Engagement Manager, Celeste leads the development of various patient-facing research communications, educational materials, and informational webinars. She also acts as a liaison between NAF, researchers, clinicians, industry professionals, and the ataxia community. Celeste strongly believes in the empowering nature of education. She is committed to supporting the agency of Ataxians and their families through access to research information and opportunities.
Dr. Hayley McLoughlin is an Assistant Professor in the University of Michigan Neurology Department, with a joint appointment in the Department of Human Genetics. Her lab primarily focuses on SCA3 research and is passionate about science communication and advocacy. She is a co-founder of SCAsource, an Ataxia research news website for patients and their families that offers scientific information written in plain language. She joined the board to bring her scientific knowledge and offer strategic guidance, with particular emphasis toward how NAF can enhance research and therapeutic development for Ataxias.
Job Titles:
- VP, Research & Chief Scientific Officer
Dr. Lauren Moore received her BS in Biomedical Physics from Northeastern University and her PhD in Neuroscience from the University of Michigan, where her research focused on preclinical assessment of antisense oligonucleotides for the treatment of Spinocerebellar Ataxia type 3. After completing her PhD, Dr. Moore transitioned into a Scientist position in industry for several years, working towards the development of gene silencing therapies for Hereditary Ataxias and other neurodegenerative diseases. In 2022, she became the first Chief Scientific Officer (CSO) of NAF. In her role as CSO, Dr. Moore is responsible for leading NAF's scientific strategy, engaging with key stakeholders in academia and industry, and expanding patient accessibility and engagement in clinical research. Dr. Moore was inspired to enter the field of Ataxia research following the diagnosis of Ataxia in her own family. She is passionate about advancing Ataxia research and the development of treatments and technologies to impact patients.
Ellie has a Bachelor's degree in Communications and a minor in Rehabilitation Services. In her role, she works closely with the Communications team to implement strategies to promote the mission, vision, and activities of the organization through various communication channels. Ellie has a rare form of Cerebellar Ataxia and wants to spread awareness. She is passionate about helping others in the Ataxia community.
Job Titles:
- Treasurer
- Retired Accountant
Greg is a retired Accountant and CPA who worked as an auditor with various agencies. He has SCA2. Greg has served his local Ataxia community for many years as co-leader of the Atlanta Support Group. He joined the board to help the community at the national level.
Jim is a business strategist who owns his own consulting firm. His twin sister, Katie, passed away in 2017 after her battle with Ataxia. Jim's family established the Katie Campbell Clinical Trial Readiness Conference funding to honor Katie and support NAF's efforts to accelerate treatment development. He joined the board because he is passionate about fighting for a day when nobody has to go through the experiences that his sister did.
Job Titles:
- Regional Development Manager
Job Titles:
- Clinical Services Director
Kelsey has a BS in Neuroscience and a doctorate in Occupational Therapy. She has over 4 years of clinical experience plus nearly 5 years of non-profit experience. She oversees the Clinical Services Branch of the Research Department and is responsible for supervising NAF's Clinical Services Programs in relation to patients, medical and social services specialists, and clinical research with the overall goal of improving clinical care for individuals with ataxia. With experience providing occupational therapy services to those with neurodegenerative diseases, she is passionate about helping others live life to the fullest.
Job Titles:
- VP, Operations & Community Services
Kyle has a BA in Mathematics and has more than 20 years of nonprofit accounting experience after starting her career as an actuary for over 15 years. She leads NAF's financial, budgetary and operations functions, and works closely with the Board of Directors Finance Committee. Her passion is to translate financial information in an engaging way that helps tell NAF's story to its members and Board.
Job Titles:
- Clinical Research Coordinator
Laura has a BS in Integrative Neuroscience from Binghamton University and 7+ years in a leadership position within intensive clinical research laboratories. In her role, Laura coordinates the Clinical Research Consortium for the Study of Cerebellar Ataxias (CRC-SCA), which manages an NAF-sponsored Natural History Study. She maintains protocols, contracts, IRB documentation, and best data practices - overseeing study timelines, recruitment goals, and invoicing. Laura is committed to supporting the needs of the site clinics because she knows that successful management of the CRC-SCA natural history study is crucial to accelerating treatment development for families affected by Ataxia.
Linda is a practicing physician. She chose her career because Ataxia runs in her family. Linda has Ataxia herself and fights everyday to make life better, for herself and for others in the same situation. She joined NAF's board to help the organization grow and stay sustainable so that people with Ataxia always have somewhere to go for help.
Job Titles:
- Community Services Director
Lori has a BA in Travel and Tourism and has been on staff at NAF for over 17 years. She provides advanced professional leadership and direction for NAF's Programs and Services Department, including the organization's support groups, advocacy activities, and Annual Ataxia Conference. She enjoys the work that she does because she sees the extraordinary impact that bringing community members together has on improving the lives of those impacted by ataxia and in accelerating the development of treatments and cures.
Job Titles:
- Research Services Associate
Mary Ann graduated from Minneapolis Business College and retired after many years in various roles in the for-profit sector. She joined NAF as a temporary part-time employee and loved it so much that she never left. In her current role, Mary Ann provides administrative support for various programs in the research department. She knows that there is a need to help those with Ataxia and is passionate about the work that she does. She enjoys the personal connections she forms with the individuals who participate in the research programs that she supports.
Job Titles:
- Senior Communications Coordinator
Mollie holds a BA in History from the University of St. Thomas and a certificate in Graphic Design. She has more than a decade of experience in the non-profit sector and prior work in the for-profit industry. Mollie assists in developing and implementing NAF's communication strategy, handling emails, print projects, and overseeing the organization's internal and external branding. She takes pride in contributing to NAF by amplifying the voices of the Ataxia community to raise awareness and accelerate treatment development.
Pat has a BBA and MBA, and brings over a decade of nonprofit management experience, specializing in finance with controller responsibilities. As a key member of the NAF's finance team, she oversees month and year-end close, annual audits, compliance, and internal controls. Driven by a passion for making a positive impact on people's lives, Pat joined NAF to align her values with the organization's mission. Her goal is to contribute to NAF's success, raising awareness for Ataxia, facilitating community access to treatments, and ultimately supporting the quest for a cure.
Job Titles:
- Regional Development Manager
Job Titles:
- Executive Committee / President
- Special Agent
Sam is a retired career Special Agent with experience leading security and investigation services. He has 3 step-siblings who had SCA3, all of whom have now passed away. With Sam's passion for advocacy and personal connection, he joined the board to serve the Ataxia community in honor of his siblings.
Sandi has been a neuroscience nurse for almost 40 years. She graduated with a BSN and MSN with a specialty in critical care and neuroscience. She is currently a Clinical Nurse Specialist in the Department of Neurosurgery at Penn State Health - Hersey Medical Center. She works with a regional support group as a nurse-facilitator as well. But her experience is not only professional, it's personal. 15 years ago, her father was diagnosed with Idiopathic Ataxia. Sandi joined the Board to work with like-minded people who are invested in the future of people with Ataxia and committed to finding a cure. She wants to ensure that people like her dad have access to the latest information on Ataxia and how to meet their personal needs. Sandi thinks it is important that people with Ataxia have the ability to network with other people affected by the disease. She said, "As a nurse and a caregiver, it is important to me that families are in the forefront, and should have resources available to them to provide the best possible care for their family members."
Job Titles:
- Community Services Coordinator
Sarah has an educational background in life sciences. Prior to her role at NAF, she spent 5 years teaching high school level sustainability and environmental science. In her current position, Sarah helps to manage and strengthen NAF's network of national support groups and community event programs, in addition to supporting NAF's Annual Ataxia Conference and various educational and advocacy events throughout the year. Her own experience of living with a rare disorder is what drew Sarah to NAF. Her favorite part of her job is having the opportunity to directly connect with and provide support to members of the Ataxia community all around the world.
Serena is the Chief Medical Officer at a therapeutics company. She has experience working in drug development for Ataxia. Prior to that, Serena was a practicing neurologist who saw Ataxia patients. The Ataxia community's resilience inspired her to join NAF's board. Serena wants to help engage the community in advancing drug development in Ataxia.
Stephanie has a BA in Organizational Communication and more than 10 years of experience in marketing/communications management. She provides advanced professional leadership and direction for NAF's internal and external communications, including the organization's digital presence, marketing efforts, advertising, and public relations. As the caregiver of a parent who has a movement disorder, Stephanie understands how a neurological disease affects every aspect of a person's life. She enjoys the work that she does because she believes that the Ataxia community deserves access to treatments and resources that will empower them to live better.
Episodic Ataxia: The Invisible Impairment Often misdiagnosed, misunderstood, and unseen. A sufferer writes of a silver lining in his tale of swoon and gloom. by Read More…
My name is Tom Lawson and I am 46 years old, married with three children and a dog. I was diagnosed with Cerebellar Ataxia six years ago. Being diagnosed with a chronic auto immune disease was unsettling, no doubt. It's sobering. It's terrifying. It is a reminder of my fragility and mortality.
But, in a weird way, it was a relief as well. I finally had an answer to my instability and why I was always off balance. For years things seemed to be getting worse and I couldn't understand it. Others could see it in me for a long time before I realized it, but it was a slow and progressive decline.
For years, I went to many different doctors to explore and try to see what was wrong with me. CT scans, ENTs, neurologists. They had no idea until about the third neurologist I saw did some pin tests on my legs and feet and I could barely feel a thing. He explained my nerves were dying (neuropathy) and that my proprioception was all off - my brain didn't seem to know where my legs were which led to this constant searching for the ground and a gait that resembled someone who had been drinking. He had a suspicion and referred me to the Johns Hopkins Ataxia Center where I saw Liana Rosenthal and sure enough I had Ataxia. I had never heard of it, but it all started to make a lot of sense.
For the first time in a long time, things added up. My cerebellum isn't working properly. My brain isn't communicating properly with my legs. It's not my fault. I am not doing anything wrong, or more importantly, I am not imagining this in anyway. As I learned more from Dr. Rosenthal about what I had wrong with me, I learned that this is a progressive disease and there is really no way to reverse the damage it's done already - and more importantly no way to stop the progression from making things worse.
That was unquestionably a difficult pill to swallow - coming to terms with the thought that I'd be with a cane or in a wheelchair one day. But, as hard as that was, it did provide important clarity for things that had always seemed to be present.
People I know from high school say they could tell I "walked a little funny" as early as back then. A good friend of mine used to say I would "make lefts" out of nowhere while walking. In my early 30s, the mother of my ex-fiancée said she thought I had hip dysplasia. Another one of my best friend's dads would say (at football tailgates in college and just after) that whether I had 2 or 10 alcoholic drinks, I would walk exactly the same.
I could never understand why I was always a little off while on my feet. 15+ years ago I can remember walking the dog and being focused on not stepping off the sidewalk - simply staying on the concrete - and many times I could not. The fact that it was difficult to stay on a 3-foot wide strip was alarming and a bit embarrassing.
Around that same time, I went on a trip to Ireland with my father and brothers. We went and visited the Carrick-a-Rede rope bridge in Northern Ireland, a famously tall and adventurous rope bridge that spans about 60 feet from the mainland to a small island about 90 feet above the ocean below. It's challenging for "normal" people. This was long before I was diagnosed with Ataxia, but I can remember thinking that it really shouldn't have been as difficult as it was for me. It was another caution flag that something was happening; something was wrong with me.
Since those early warning signs, things only got worse. There were times when I was denied entry into bars because I was thought to be too drunk already - even though I had not had a single drink. There was a time when I went to pick up my son at after school daycare and the teacher didn't want to release him to me because she thought I was intoxicated or on some kind of drugs. It was only after I showed her the card that Dr. Rosenthal provided me that she understood and apologized profusely.
My name is Tom Lawson and I am 46 years old, married with three children and a dog. I was diagnosed with Cerebellar Ataxia six Read More…