In 1997, a year after the gene that causes Friedreich's ataxia was identified, Ron and Raychel Bartek received the diagnosis of their son, Keith, and discovered that there was no treatment for the disease and no group dedicated to finding one. So they started Friedreich's Ataxia Research Alliance (FARA). Since then, FARA alone has funded more than $20 million in research on the disease and helped secure a similar amount from co-funding organizations.
Member Spotlight Archive
When the Pancreatic Cancer Action Network was founded in 1999, the 5-year relative survival rate was 5.3%, according to National Cancer Institute statistics. In the intervening years, the survival rate has remained stubbornly low. What is different is awareness: Today, more research is being conducted by more scientists, and the pancreatic cancer advocacy community has never been bigger. So too for Manhattan Beach, CA-based Pancreatic Cancer Action Network, which hired its first employee in 2000 and will soon hire its 100th.
Founded in 2002, the Association of Clinical Research Organizations-ACRO-began with five institutional members and currently has eight, all of which are in the private sector; those eight companies are far and away the giants of the industry. Though academic and nonprofit organizations are not prohibited from becoming ACRO members, ACRO is focused on the private sector.
From the beginning, the American Chemical Society has had a tie to medicine: It was founded in 1876 by 35 chemists at the College of Pharmacy of the City of New York. Chemistry in the pursuit of health remains a focus for ACS and its membership-now more than 163,000. The organization employs nearly 2,000 people; most work to produce the organization's more than 40 peer-reviewed journals and multiple databases that are indispensable to scientists worldwide.
Since 1974, AdvaMed-short for Advanced Medical Technology Association-has represented the medical technology sector. Today, the organization has more than 300 members of all sizes, representing medical devices, diagnostic products and health information systems.
The genesis of the Parkinson's Action Network (PAN) goes back to 1987, four years before the organization's founding. That year, Joan Samuelson left a career in law after being diagnosed with Parkinson's disease; she threw her might into advocating for people living with Parkinson's. Four years later, PAN was born, and its advocacy continues today.
In 1976, Ken Stuart, PhD, opened the Issaquah Group for Health and Environmental Research, which was set up to foster the best and brightest researchers who were working to combat trypanosomes and related parasitic diseases. Today, the organization is known as Seattle BioMed, and it employs 15 faculty members and more than 330 workers in all.
From its original 121 member institutions when it was founded in 1969, American Association of Colleges of Nursing (AACN) has grown to more than 700 member institutions in all 50 states, DC and Puerto Rico. Besides advocacy, AACN is a resource to its members in a number of other ways: sponsoring an autonomous accreditation unit, developing curriculum standards and warehousing statistics about nursing schools and students across the country.
GRA is broadly focused; Cassidy identified Internet security and energy management products as ones in the pipeline that have him excited. But biomedical research plays a critical role in the state's economic development plans, and more than half of GRA's portfolio involves biomedical research.
The Georgia Research Alliance doesn't conduct research itself; instead, as its name implies, it facilitates research collaboration among six universities in the State of Georgia: Clark Atlanta University, Emory University, the Georgia Institute of Technology, Georgia State University, Georgia Health Sciences University and the University of Georgia. Since 1990, GRA has leveraged $525 million of state funding into $2.6 billion in additional public and private financing; moreover, it has played a role in the creation of more than 150 companies.
Children's Hospital's 10 Centers of Emphasis encompass seemingly disparate research areas, but all contribute to the greater strategic goals of the hospital's research efforts.
The Children's Hospital of Philadelphia was founded in 1855, but it took nearly seven decades for research to become part of the institution's mission. Growing from a one-room laboratory in 1922, Children's Hospital has made incredible progress since: the basis of the foundation of the Society for Pediatric Research, the country's first pediatric research department, and numerous scientific breakthroughs and vaccine discoveries.