Lauren Webb Email & Phone Number

Chicago, IL, US

• Work collaboratively with a wide array of external stakeholders, including patient advocates, academia, biotech industry, government agencies, and non-profit organizations on patient advocacy strategy, clinical.
• Member of the Advocacy Council of Les Turner ALS Center at Northwestern Medicine, working closely with Center Director, researchers, and clinicians to promote basic scientific research and clinical care in ALS

• Launched MY ALS Decision Tool, a web-based, interactive series of questions and considerations, helping people living with ALS to make complex medical decisions
• Initiated inaugural 2-day Chicago Virtual NEALS ALS Clinical Research Learning Institute (CRLI), training 30 patient advocates, enhancing ALS initiatives such as fundraising, legislative & regulatory advocacy, and.
• Developed new partnerships and resources to improve equitable access to clinical trials, culturally sensitive care, and health literacy that empowers families

• Directed MDA Care Centers and Affiliates that serve as the nexus for clinical care and medical research, located at 150 of the top health care institutions across the US
• Designed and implemented MDA’s first nationwide Care Center certification process
• Spearheaded innovations to advance MDA care, including a new case-management platform, a grantmaking website for clinicians, and an upgraded registry platform
• Managed yearly budget of $7M+ for the MDA Care Center Network and US Neuromuscular Registry

• Managed studies for various research consortia and pharmaceutical companies, as well as all aspects of the research program, from Institutional Review Board submissions to budgeting to protocol development
• Organized a Center for Disease Control-sponsored conference on spinal muscular atrophy and other pediatric neuromuscular diseases in May 2011 and transition seminars with MDA staff
• Increased clinical trials from 2 studies to 28 studies by optimizing clinical trial infrastructure, leveraging foundation dollars, and rapidly building research portfolio and clinical team

• Grew neurological portfolio by $1.2M+ for specialty laboratory by 20% year over year in key areas, including Alzheimer’s disease, neuromuscular, movement disorders, and developmental disorder
• Appointed to market-research team for new reproductive division, evaluating DNA collection methods
• Established and maintained relationships with neurologists, geneticists, genetic counselors, residents, fellows, and hospital administrators, creating tremendous growth in Illinois for neurological and genetic testing

Disability Awareness Coordinator October 2000-January 2001

Clarina Howard Nichols Center is a private nonprofit agency providing shelter and services for survivors of domestic and sexual violence.

School Of Social Service Administration, Graduate Program In Health Administration And Policy

Ba, Political Science