Jane Larkindale

The Friedreich's Ataxia Research Alliance provides patient registry services. The private company is based in Downingtown, PA.

MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education. MDA combats neuromuscular diseases through programs of worldwide research, comprehensive medical and support services, and far-reaching professional and public health education. With national headquarters in Tucson, MDA has more than 200 offices across the country, sponsors some 200 hospital-affiliated clinics and supports more than 330 research projects around the world. MDA supports more research on neuromuscular diseases than any other private-sector organization in the world. MDA scientists are in the forefront of gene therapy research and have uncovered the genetic defects responsible for several forms of muscular dystrophy, Charcot-Marie-Tooth disease, a form of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), childhood spinal muscular atrophy and several other neuromuscular conditions. The Association's comprehensive services program includes diagnostic and follow-up medical consultations, flu shots, support groups, MDA summer camps for youngsters, a medical equipment program, assistance with equipment repairs and resource referral. Through its national advocacy program, MDA works to make life better for people with muscular dystrophy and related muscle diseases by providing representation in matters of public policy and research advancement, nationally and internationally; and facilitating active involvement in these areas by the people it serves. MDA was created in 1950 by a group of adults with muscular dystrophy, parents of children with muscular dystrophy and a physician-scientist studying the disorder. Since its earliest days, it has been energized by its number-one volunteer and national chairman, entertainer Jerry Lewis.

Critical Path Institute is a nonprofit organization established in 2005 as a public and private partnership with the FDA's Critical Path Initiative program. The non-profit company is based in Tucson, AZ, and operates from Ireland with additional staff in multiple other locations. The company's mission is to catalyze the development of new approaches that advance medical innovation and regulatory science, accelerating the path to a healthier world. The company orchestrates the development of drug development tools through an innovative, collaborative approach to the sharing of data and expertise, and accelerate the pace and reduce the costs of medical product development by building consensus among the participating institutions. The company was founded in 2005 by Raymond L. Woosley, Glenn C. Rice. Daniel M. Jorgensen has been the CEO of the company since 2022.