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A world without Ataxia.
To accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.
Ataxia is a rare neurological disease affecting tens of thousands of people in the US and many thousands more around the world. It is progressive, affecting a person’s ability to walk, talk, and use fine motor skills.
The National Ataxia Foundation (NAF) was established in 1957 to help persons with Ataxia and their families. Our mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia. NAF’s vision of a world without Ataxia will be accomplished through our primary programs of funding Ataxia research, providing vital programs and services for Ataxia families, and partnering with pharmaceutical companies in the search for treatments and a cure. We work closely with the world’s leading Ataxia researchers and clinicians, promoting exchanges of ideas and innovation in Ataxia discovery.
NAF began with a single doctor’s quest to find the cause and cure for Ataxia. John W. Schut, MD founded the National Ataxia Foundation to relentlessly pursue answers after he lost family members to the disease. Eventually inheriting the disease and succumbing himself, his dream lived on as NAF’s efforts to fund research increased – leading to some of the most important Ataxia discoveries. Today, NAF is guided by the world’s most renowned Ataxia scientists.
NAF offers many educational resources for Ataxia, including a comprehensive library of brochures, fact sheets, and books. NAF also publishes Generations, a quarterly magazine centered around Ataxia and families affected. We provide a number of ways for the Ataxia community to connect, such as: NAF Support Groups, a Facebook Ataxia Support Group, various Ataxia events, medical expos, and most importantly, the Annual Ataxia Conference – a two-day conference designed for Ataxia experts and Ataxia families to come together.
Join us as a member today – for FREE! As pharmaceutical industry interest in Ataxia continues to grow, our members will play an integral role in moving research forward to get treatments to the market. Our members will be the first to know when there are new opportunities to participate in research or clinical trials for their specific type of Ataxia. Members also receive early access to our free webinars, NAF’s eNewsletters and Generations publications.
Our donors continue to support the Ataxia community in a big way! In 2022, your generosity allowed us to improve on the programs we offer.
This Annual Report is packed with information about NAF’s impact last year. Here are a few highlights that we’re proud to share:
Thank you members, donors, volunteers, and collaborative partners, for a successful year!
If you are a member of the press or preparing for an interview with the press, view our media page for more information.
Sam Kirton
Fairfax, VA
2013
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.
Linda Snider-Sidwell, MD
Omaha, NE
2018
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.
Greg Rooks
Atlanta, GA
2014
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.
John Mauro
Auburn, MA
2014
John is a master chef who runs his own catering company. He brings the personal persepective of having Ataxia and enjoys serving as an advocate, speaking for those who cannot speak for themselves. John has been involved with NAF for many years, volunteering as a support group leader and Walk N’ Roll organizer. He has also participated in other projects. John is passionate about education for the Ataxia community and awareness for the general public.
David Brunnert
Houston, TX
2018
David is a professional engineer. SCA3 runs in his family. He is an avid advocate for research participation, even volunteering as a healthy “control” for a research study that his brother participates in. David believes in NAF’s mission and said, “I am passionate about changing the outcomes for Ataxians and their families.”
Michael Cammer
Downington, PA
2017
Mike is a retired accountant. He was diagnosed with Sporadic Ataxia in 2005, but has lived with symptoms since the early 90’s. He is the Central PA Ataxia Support Group Leader. Mike joined NAF’s board to be a voice to promote advocacy, awareness, and research. He said that he wants to “help others open the door to acceptance and show them there is life with Ataxia.”
Cindy DeMint
Yorba Linda, CA
2018
Cindy is a sales/marketing executive. She has three sons with AOA2, which is a recessive type of Ataxia. She has been an avid support of NAF for more than 11 years, serving as the Orange County Support Group Leader and hosting Walk N’ Rolls in Orange County. Cindy joined the board because she would like to help raise awareness and secure funding to search for a cure.
John Dwyer
Minneapolis, MN
2022
John is a retired commercial insurance broker. He now devotes his time and energy to sharing his experiences and wisdom with the next generation. His long time friends have three bothers living with Ataxia. John has fundraised for NAF on behalf of his friends for many years. He joined the board to act on NAF’s mission to support those living with the disease.
Mark Hazlin
Washington, DC
2023
Mark is a PR executive in Washington, DC. His mother and 7 other relatives are diagnosed with hereditary Ataxia, although the specific type is unknown. Mark wants to help accelerate treatment development and improve clinical care. He is passionate about helping with NAF’s mission because it took 4 years for his own mother to receive a diagnosis. Mark said, “If we hope to find a cure, rare diseases like this need attention, funding, and support.”
Serena Hung, MD
Watertown, MA
2022
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.
Jim Keene
Atherton, CA
2021
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.
Denise Kolpack
Fargo, ND
2022
Denise is currently a City Commissioner in North Dakota. Previously, she served as the vice president of brand and marketing communications for Blue Cross Blue Shield of North Dakota. She is passionate about helping the Ataxia community.
Hayley McLoughlin, PhD
Ann Arbor, MI
2023
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.
Ann Riley
Washington, DC
2022
Ann is an attorney with the Federal Judiciary working in the Office of Legislative Affairs in Washington D.C. She is passionate about advancing disability rights. Multiple members of Ann’s family have been diagnosed with SCA2. She joined the Board for an opportunity to connect with and contribute to the Ataxia community. Ann said, “I am hopeful that with NAF’s steadfast devotion to its mission, to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia, we will find treatments and a cure for Ataxia in my lifetime.”
David Spotts
Boston, MA
2023
David is a biotech executive with experience working on Ataxia drug development. He saw the impact of the disease on families affected by Ataxia. In his career, David has worked closely with patient advocacy groups from an industry perspective. He is excited about the opportunity to bring his experience to NAF to support an organization with such an important mission. David said, “I welcome the chance to help NAF think through the impact of hopefully many more Ataxia treatments and to how best to navigate the years ahead.”
Harry T. Orr, PhD
Minneapolis, MN
Vikram Shakkottai, MD, PhD
Dallas, TX
Susan Perlman, MD
Los Angeles, CA
Laura Ranum, PhD
Gainesville, FL
Liana S. Rosenthal, MD, PhD
Baltimore, MD
Larry Schut, MD
Maple Lake, MN
Camille Daglio
Hattiesburg, MS
Listed by department.
Andrew Rosen
andrew@ataxia.org
2019
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.
Kyle Billadeau
kyle@ataxia.org
2020
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.
Sue Baker
sue@ataxia.org
2023
Sue comes to NAF having earned her accounting degree. She is a certified nonprofit accounting professional (CNAP) and held accounting positions at for-profit and nonprofit organizations as well as city and county governments. Sue is responsible for all core accounting functions including A/P and A/R, payroll, maintaining the general ledger, journal entries, reconciliations, and assisting with the month-end close. Sue is looking forward to connecting with those who are affected by Ataxia and hopeful for that day when this disease is eradicated by a cure. Until the cure is found she is passionate about Ataxia patients living their best life.
Lauren Moore, PhD
lauren@ataxia.org
2022
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.
Celeste Suart, PhD
celeste@ataxia.org
2023
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.
Kelsey Trace
kelsey@ataxia.org
2019
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.
Beth Bowerman
beth@ataxia.org
2021
Beth Bowerman, who holds a B.S. in Public Health, is currently pursuing a Master of Public Health degree at the University of Minnesota. She contributes to various research initiatives, such as Ataxia Clinical Training, the International Congress of Ataxia Research, and the NAF grant program. Beth’s main focus is to enhance the health of populations and communities, with a particular focus on Ataxia and rare disease populations. Her passionate work includes championing the inclusion of patient perspectives in the drug development process, advancing Ataxia research efforts, and empowering the Ataxia community through advocacy education.
Aimee Alcott
aimee@ataxia.org
2023
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.
Mary Ann Peterson
mary@ataxia.org
2016
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.
Lori Shogren
lori@ataxia.org
2005
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.
Sarah Pilato
sarah@ataxia.org
2021
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.
Joel Sutherland
joel@ataxia.org
2016
Joel has a a BA in Public Relations and Marketing. He spent 28 in sports marketing working for organizations such as the Los Angeles Dodgers, Minnesota Twins, and the National Hockey League. His entrepreneurial spirit resulted in owning several amateur baseball teams in Minnesota as well as his own sports marketing firm. In 2011, Joel entered the non-profit sector becoming the Executive Director for the Minnesota/Dakotas Chapter for the Cystic Fibrosis. This is where he learned first-hand that money buys research and research finds answers, a philosophy he brought to NAF in 2016. He loves bringing a compassioned tenacity to his daily work of raising funds and supporting NAF’s volunteer community which, in turn, supports the mission of NAF of accelerating the development of treatments and a cure while working to improve the lives of those working with Ataxia.
Jon Wegman
jon@ataxia.org
2018
Jon received his BA from the University of Iowa and a masters from the University of Wisconsin- La Crosse. Jon is responsible for a variety of Development areas including national fundraising events, major giving, and legacy giving. He has a passion for serving the Ataxia community because of the genuineness, positivity, and strength of those impacted by Ataxia.
Rachel Larsen
rachel@ataxia.org
2022
Rachel graduated with a BA from the University of Wisconsin – Madison. She has 10 years of nonprofit experience, ranging from event planning to peer-to-peer fundraising, to securing corporate partnerships. She supports NAF’s Western Region and aims to energize the community through supporting events, fundraising, and fostering connections between members of the Ataxia community and beyond. Rachel is excited to support NAF’s mission because of the current advancements in the medical community that are bringing us ever closer to treatments and a cure.
Meg Hanna
meg@ataxia.org
2022
Meg has a BA in Music Education, and six years of experience in the nonprofit sector working in development, programming, and administrative roles. She supports NAF’s development team by maintaining and analyzing donor records and by ensuring that fundraising volunteers have the tools they need to be successful. Meg finds inspiration in seeing how much the ataxia community can accomplish when working together.
Stephanie Lucas
stephanie@ataxia.org
2017
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.
Mollie Utting
mollie@ataxia.org
2018
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.
Tanoa Thomé
tanoa@ataxia.org
2022
Tanoa studied Public Health at the University of Minnesota. Before joining NAF, he was a leasing manager, using his social media experience as a marketing tool. Tanoa oversees all of NAF’s social media efforts. As part of his role, he creates content to share the work that NAF is doing, works to create Ataxia awareness online, and connects with members of the Ataxia community. Tanoa knows that social media is a powerful tool and is dedicated to using NAF’s online presence in order to help those living with Ataxia.
Vikram Shakkottai, MD, PhD
University of Texas Southwestern
Dallas, TX
Laura Ranum, PhD
University of Florida, College of Medicine
Gainesville, FL
Liana S. Rosenthal, MD, PhD
Johns Hopkins University
Baltimore, MD
Matthew Burns, MD, PhD
University of Florida
Gainesville, FL
Khalaf Bushara, MD, MRCP
University of Minnesota
Minneapolis, MN
Beverly Davidson, PhD
Children’s Hospital of Philadelphia
Philadelphia, PA
Brent L. Fogel, MD, PhD
David Geffen School of Medicine
University of California, Los Angeles
Los Angeles, CA
Christopher M. Gomez, MD, PhD
University of Chicago
Chicago, IL
Sheng Han Kuo, MD
Columbia University
New York City, NY
Pravin Khemani, MD
Swedish Neuroscience Institute
Seattle, WA
Albert La Spada, MD, PhD, FACMG
University of California Irvine School of Medicine
Irvine, CA
David Lynch, MD, PhD
University of Pennsylvania
Philadelphia, PA
Puneet Opal, MD, PhD
Northwestern University Feinberg School of Medicine
Chicago, IL
Harry T. Orr, PhD
University of Minnesota
Minneapolis, MN
Gülin Öz, PhD
Center for Magnetic Resonance Research,
University of Minnesota
Minneapolis, MN
Henry Paulson, MD, PhD
University of Michigan Medical Center
Ann Arbor, MI
Susan Perlman, MD
UCLA Neurological Services
Los Angeles, CA
Stefan Pulst, MD
University of Utah Health Sciences Center
Salt Lake City, Utah
Jeremy D. Schmahmann, MD, FAAN, FANA, FANPA
Harvard Medical School
Boston, MA
Larry Schut, MD
Maple Lake, MN
George “Chip” Wilmot, MD, PhD
Emory University
Atlanta, GA
Robert B. Wilson, MD, PhD
University of Pennsylvania
Philadelphia, PA
Mailing Address
PO Box 27986
Golden Valley, MN 55427
Physical Address
600 Highway 169 South
Suite 1725
Minneapolis, MN 55426
Our generous donors help us fund promising Ataxia research and offer support services to people with Ataxia. Your gift today will help us continue to deliver on our mission to improve the lives of persons affected by Ataxia.
Join for FREE today! Become a part of the community that is working together to find a cure. As a member you will receive access to the latest Ataxia news with our e-newsletter and Generations publication.
501(c)(3)
EIN 41-0832903
Mailing Address:
PO Box 27986
Golden Valley, MN 55427
Physical Address:
600 Highway 169 South
Suite 1725
Minneapolis, MN 55426
763-553-0020
763-553-0167 (Fax)
