Partners
Industry
23andMe
23andMe is dedicated to helping individuals understand their own genetic information using recent advances in DNA analysis technologies and web-based interactive tools. 23andMe enables individuals to gain deeper insights into their personal health, ancestry and inherited traits as well as giving them the opportunity to advance genetic research through participation in 23andMe’s research studies.
Abbott Labs
Abbott is a global, broad-based health care company devoted to the discovery, development, manufacture and marketing of pharmaceuticals and medical products, including nutritionals, devices and diagnostics. The company employs nearly 90,000 people and markets its products in more than 130 countries.
Acorda Therapeutics
Acorda Therapeutics is a biotechnology company developing therapies for multiple sclerosis, spinal cord injury and related nervous system disorders. The Company’s marketed products include AMPYRA® (dalfampridine) Extended Release Tablets, 10 mg, a potassium channel blocker approved as a treatment to improve walking in patients with multiple sclerosis (MS), this was demonstrated by an improvement in walking speed; and ZANAFLEX CAPSULES® (tizanidine hydrochloride), a short-acting drug for the management of spasticity. The Company’s pipeline includes a number of products in development for the treatment, regeneration and repair of the spinal cord and brain.
Avanir Pharmaceuticals
Avanir is a biopharmaceutical company focused on developing and commercializing novel therapies for central nervous system disorders with high unmet medical need.
Biogen Idec
Biogen Idec uses cutting-edge science to discover, develop, manufacture and market therapies for serious diseases with a focus on neurology, immunology and hemophilia. Founded in 1978, Biogen Idec is the world’s oldest independent biotechnology company. Patients worldwide benefit from its leading multiple sclerosis therapies, and the company generates more than $4 billion in annual revenues.
BBK WorldWide
BBK Worldwide is globally renowned for accelerating time to market for new and improved medicines and treatments by using innovative strategies, programs, and technologies to streamline the clinical trial enrollment process. With offices in Boston, London, Los Angeles, and Osaka – as well as strategic alliance partners in every world region where clinical trials are conducted – BBK Worldwide has evolved into the internationally recognized leader in patient recruitment. BBK continues to reshape its industry by combining its visionary perspective with three decades of experience enrolling thousands of clinical studies in more than 70 countries. www.bbkworldwide.com
Merck
Today’s Merck is a global healthcare leader working to help the world be well. Merck is known as MSD outside the United States and Canada. Through our prescription medicines, vaccines, biologic therapies, and consumer care and animal health products, we work with customers and operate in more than 140 countries to deliver innovative health solutions. We also demonstrate our commitment to increasing access to healthcare through far-reaching policies, programs and partnerships.
Novartis Pharmaceuticals Corporation
Novartis Pharmaceuticals Corporation wants to improve patients’ lives by providing customers with innovative science and differentiated healthcare solutions delivered by diverse and engaged talent with integrity, passion and focus on performance.
Sanofi-Aventis
Sanofi-aventis, a leading global pharmaceutical company, discovers, develops and distributes therapeutic solutions to improve the lives of everyone. Sanofi-aventis is listed in Paris (EURONEXT: SAN) and in New York (NYSE: SNY). For more information, please visit www.sanofi-aventis.com.
UCB
UCB, Brussels, Belgium (www.ucb.com) is a biopharmaceutical company dedicated to the research, development and commercialization of innovative medicines with a focus on the fields of central nervous system and immunology disorders. Employing more than 10 000 people in over 40 countries, UCB achieved revenues of 3.6 billion Euro in 2008. UCB is listed on Euronext Brussels (symbol: UCB).
Research & Academia
ALS Untangled
ALSUntangled helps patients with amyotrophic lateral sclerosis (ALS) to investigate alternative and off-label ALS treatments.
Forbes-Norris Pacific ALS Centre
The Forbes Norris MDA/ALS Research Center has been at the forefront of neuromuscular disease research for over 25 years. The dedicated and experienced team of experts at the Forbes Norris Center
coordinates their efforts between patient care in our clinic, research studies, and creating a multifaceted resource for patients with ALS. In collaboration with PatientsLikeMe, Neuropsychologist Dr. Susan Woolley-Levine was able to validate the development of a brief carer-rated questionnaire to evaluate cognitive change amongst patients with ALS.
King’s College London
King’s College London is one of the top 25 universities in the world, the fourth oldest in England and is The Sunday Times ‘University of the Year 2010/11′. A research-led university based in the heart of London, King’s has nearly 23,500 students from around 140 countries. King’s has an outstanding reputation for providing world-class teaching and cutting-edge research.
NEALS Northeast Amyotrophic Lateral Sclerosis Consortium
The Northeast ALS Consortium (NEALS), is an independent, non-profit consortium of clinical and scientific investigators who conduct ALS research at their affiliated institutions. The mission of NEALS is to take advances in ALS research from the lab and translate them rapidly into new treatments for people with ALS.
Oxford University MND Care & Research Centre
The Oxford University MND Care & Research Centre, based at the John Radcliffe Hospital, provides multidisciplinary care for MND/ALS patients from across the Southern UK. The team has a broad portfolio of laboratory (genetics, cell biology) and clinical (MRI, biomarkers, epidemiology) research
Palo Alto University
Palo Alto University is a diverse and dynamic community dedicated to education with an emphasis in the behavioral and social sciences, to promoting future innovators and leaders for the benefit of society; to generating knowledge through research and scholarship of the highest level;and to providing services to the community informed by science and scholarship.
Penn State Milton S. Hershey Medical Center
The ALS Clinic at Penn State Milton S. Hershey Medical Center is one of the leading research institutions in the field, particularly around issues of quality of life (QOL) for patients suffering from ALS. In collaboration with a research team lead by Dr. Zachary Simmons, PatientsLikeMe helped recruit more than 130 ALS patients to take part in a web-based survey of their healthcare experiences. In particular, we were able to help researchers contact hard-to-reach patients who don’t normally attend a specialist ALS clinic, helping to increase the representativeness of their sample.
The Pew Internet & American Life Project
The Pew Internet & American Life Project is one of seven projects that make up the Pew Research Center, a nonpartisan, nonprofit “fact tank” that provides information on the issues, attitudes and trends shaping America and the world. The Project produces reports exploring the impact of the internet on families, communities, work and home, daily life, education, health care, and civic and political life.
The Robert Packard Center for ALS Research at Johns Hopkins
The Packard Center for ALS Research at Johns Hopkins enables the world’s best ALS scientists to collaborate and access funding so that they may continue work to rapidly develop new treatments and find a cure for ALS, also known as Lou Gehrig’s disease. The hope is in the science.
The University of Wisconsin
The School of Library and Information Studies at the University of Wisconsin exists to educate professionals to bring together information in all its cultural forms and the people who need or want it, thereby contributing to individual and collective knowledge, productivity, and well-being. **Assistant Professor Catherine Arnott Smith, a medical informatics researcher specializing in medical vocabularies, analyzed the symptom descriptions generated by our patients and found that patient-generated symptom descriptions aligned closely with a number of professional medical vocabularies.**
Nonprofits
Accelerated Cure Project
Accelerated Cure Project for Multiple Sclerosis is a national nonprofit organization dedicated to curing MS by determining its causes. This unique organization is driven by the philosophy that “curing means preventing the disability caused by MS, permanently stopping the progress of MS, and repairing the damage already caused in patients with MS.”
Myelin Repair Foundation
The Myelin Repair Foundation (MRF) is the only non-profit medical research foundation solely focused on identifying myelin repair drug targets that will lead to treatments for multiple sclerosis.
National Kidney Foundation serving New England
The National Kidney Foundation, Inc., a major voluntary health organization, seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation. The New England chapter serves those living in Massachusetts, New Hampshire, Vermont, and Rhode Island.
National MS Society, Central New England Chapter
For nearly 60 years, the Central New England Chapter has provided help for today, and hope for tomorrow to nearly 16,000 individuals and families affected by MS in Vermont, New Hampshire and Massachusetts.
Parkinson’s Unity Walk
The Parkinson’s Unity Walk (PUW), a grassroots organization, began in 1994 through the dedicated efforts of patients, families, support groups, and friends who were affected by Parkinson’s disease. Their main goal is to raise awareness and funds for research to find a cure for Parkinson’s.