Courageous Parents Network was created to share the essential elements of understanding, coping, grieving and healing. Through their programs—Education, Community and Advocacy—CPN and the generous families and providers who are part of the CPN network offer parents the information, skills, tools and virtual support they need during their child’s illness journey, so as to make the impossible possible.

Leads Sanofi Genzyme's public affairs and patient advocacy efforts and engagements for the US rare disease business.In charge of a 3-person team providing support to Sanofi Genzyme's Specialty Care business unit for 4 commercial therapeutic areas and 7 advanced-stage clinical development programs in rare diseases (neurology, nephrology, hematology, metabolic disorders). Identifies and communicates key community insights to better inform the company's approach to developing innovative medicines that matter most to patients. Supports efforts to advance policies for appropriate, sustainable, and affordable access to a healthcare system that works for patients and ensures innovation is a priority within the drug development ecosystem. Actively engages with the US rare diseases advocacy organizations on patient-centered strategies and initiatives to:• Advance Medical Innovation - In collaboration with R&D and Medical, listen to and partner with advocates to incorporate patients’ insights from research through commercialization.• Ensure Access – Partner with advocates to improve patient access and affordability, and keep patients’ needs at the center of policymaker and payer decisions. • Improve Health - Partner with advocates to empower patients to have informed discussions with their providers about solutions to improve their health.

Member of 6-person global patient advocacy team tasked with leading all patient-facing Rare Disease strategy and engagement, internally and externally, and driving broad advocacy programming including patient artwork, global grants, patient speakers, disease awareness days, and special projects as needed. Supporting Rare Nephrology franchise (US, EU, and Global), leading advocacy efforts for ADPKD, Fabry Disease, and Alport Syndrome, with responsibility for developing and executing patient advocacy strategy, including outreach, education, updates, and engagement with patient groups around the world. Active partner with clinical operations and R+D to drive patient engagement in early-stage development programs and clinical trial opportunities. Collaborating cross-functionally with communications, public affairs, medical affairs, commercial, and R+D to connect the global patient advocacy community with business priorities and company initiatives, ensuring the patient voice and perspective is present at all stages, development through post-approval.Mentoring and developing internal patient advocacy networks in Latin America and Southeast Asia.

Charged with building and developing strong, productive relationships at the site level with coordinators, investigators, and staff to remove barriers, speed study start-up, reduce budgets, increase satisfaction, and support faster accrual. Accountable for conducting feasibility, site selection, recruitment planning, recruitment risk analysis and management, study execution, creation of unique, patient-focused collateral and awareness campaigns, as well as vendor engagement and management as related to sites and patients. Responsible for pre-clinical patient advocacy for rare disease and immune-oncology (Ph. I - III).

Leading the development, approval, and implementation of a comprehensive patient advocacy function at Idera. Spearheading patient advocacy efforts globally across 4 active clinical programs (1 rare disease, 3 oncology).Handling all patient communication: Create and implement standard responses, write and develop patient facing materials unique to patient needs, and responding to all inquiries. Manage patient database and specific clinical trials website content. Steward through appropriate internal and external ethics review committees. Attend patient meetings to engage with patients and share feedback with Idera team.Representing the patient voice: Actively sit on clinical teams, including study, protocol and ICF review, site identification and feasibility assessments, travel policy development, communication and awareness activities. Coordinate patient advisory committees. Guiding feasibility and retention: Use available data and competitive intelligence to identify best sites. Design, circulate, and review SFQs unique and appropriate to each study. Lead committee making site recommendations. Work with sites and CRO partners throughout start-up process to implement sound recruitment plans and monitor progress towards recruitment throughout study. Share best practices and generate solutions to recruitment challenges. Building relationships: Identify and engage patient and professional advocacy group partners on an ongoing basis to develop and deepen relationships in support of company goals for trial accrual, patient and community feedback and information gathering, and employee engagement. Coordinate with CRO and site-level staff as needed for feedback and innovation. Participate in professional advocacy development groups.Maximizing partnerships: Create relationships, not transactions, to engage groups in support of clinical operations - medical and patient advisory board connections, site identification, collateral development, and trial awareness.

Lead Boston-area development efforts as part of the Massachusetts Chapter of the Muscular Dystrophy Association, a non-profit health organization dedicated to finding treatments and cures for muscular dystrophy, ALS, and neuromuscular diseases. Member of the National Distinguished Events strategy team. Guest lecturer for new staff on-board training.Leading fundraiser nationally, with #1 finishes for percent of sales goal achieved for 2011 and 2012 calendar years. Member of sales budget beating Massachusetts team for 2013 and 2014.Staff point-person for MDA at Mass General Hospital's Pediatric Neuromuscular Clinic - attend clinic, serve as liaison for patients between caregivers, MDA, community resources, and pharma, work with other MDA Chapter offices to provide services and care as needed, build and foster relationships with other non-profit orgs, biotechs, and pharma companies.Handle all aspects of Greater Boston based social and corporate events, including: committee recruitment, development and management., design & printing of event collateral, auction solicitation and sales, volunteer recruitment and management, identifying and managing media & in-kind partners, creating and selling sponsorship levels & opportunities, generating sales/budget/performance reports for events, event execution and logistic oversight start to finish, management of team members assisting with events, and post-event acknowledgements. Identify, develop and oversee partnerships with major sponsors from Boston's labor union, professional sports, commercial real estate, finance, construction, and large-chain retail industries.Identify and create opportunities for cause-related marketing, business development, and brand advancement within the Greater Boston community to benefit MDA, our brand, and the sponsor. Member of several national MDA committees including Distinguished Events, National Income Development, and SHOW of STRENGTH Telethon.

Fundraiser, event planner, grantmaker

Constituent relations; legislative & policy research