Resources

The DMRF is a 501(c)3 non-profit organization dedicated to serving all people with dystonia and their families. Since 1976, the DMRF has grown from a small family-based foundation into a dynamic membership-driven organization led by a Board of Directors and network of volunteers with personal connections to dystonia. Because dystonia hits so close to home for our directors and volunteers, the DMRF leadership is motivated by an unrelenting drive to find a cure and an unwavering commitment to serving people affected by dystonia.

Neurosymptoms.org was started by a physician in 2009, frustrated that there was literally NO information for his patients with FND on the internet. Since then, the FND landscape has changed dramatically. We have FND patient organisations and from 2019 the FND society for health professionals.

The Multiple System Atrophy (MSA) Coalition™ founded in 1989, is a 501(c)(3) charitable organization (EIN: 74-2926378) devoted to improving the quality of life and building hope for people affected by MSA through a four-pillar mission: Providing patients and caregivers with trusted and compassionate emotional support Educating patients, care-partners and healthcare professionals with credible, critically important and relevant information Funding patient-centric collaborative research aimed at alleviating symptoms, slowing disease progression and discovering a cure Building a sense of community by connecting and unifying people affected by MSA

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. Founded in 1957, NAF is a Minneapolis-based nonprofit organization established to help persons with Ataxia and their families. The Foundation’s vision of a world without Ataxia will be accomplished through its 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. NAF works closely with the world’s leading Ataxia researchers, promoting exchanges of ideas and innovation in Ataxia discovery.

Neurodegeneration strikes when we least expect it. Prime of life neurodegeneration is a spectrum of relatively rare diseases that often afflict people during productive, active years and lead to debilitating symptoms and early death. They are generally categorized as frontotemporal disorders and are characterized by progressive personality, behavior, language, and motor decline. These diseases create a level of functional impairment that significantly compromises the ability to carry out activities of daily living. There is currently no treatment and no cure, but there is hope. Research into these diseases may be a gateway to understanding and ultimately preventing.