Boston has become the leading life science cluster in the world due in large to the role that patient advocacy groups play in promoting and accelerating the development of diagnostics, support devices and treatments. During this workshop, we will explore the local culture of patient advocacy philanthropy as well as discuss best practices and insights for connecting to and utilizing those resources.
Join us for a keynote address by Robert Coughlin, President and CEO of MassBio followed by interactive breakout sessions exploring specific aspects of patient advocacy and partnering and led by subject matter experts from the Boston ecosystem.
Whether you are a pharmaceutical executive with an established global company, a life science entrepreneur developing a new product, or a nonprofit executive with a disease nonprofit, if you are interested in collaborating and accelerating product development for patients with unmet needs, this event is for you.
8:30am: Welcome and Keynote Address: Bob Coughlin, MassBio and Rob Schultz, Inspire
9:00am: Community Talk #1
9:45am: Community Talk #2
10:30am: Closing Keynote Talk: Andrew Frates
11:00am: Close of Event
We will ask each participant to choose one breakout session per time period. Space is limited – first come, first served.
Andrew Frates – ASICS and Peter Frates Family Foundation
Andrew Frates currently lives in Beverly MA and works as Marketing Manager for ASICS. His brother, Peter, was diagnosed with ALS in March of 2012. At that time, Andrew put his career on hold to help take care of his brother and raise awareness and funds for the cause. Andrew and family members created Team FrateTrain as a community base for friends to learn, advocate, and fight for the mission of the Frates Family.August 2014, Peter and Andrew along with their family and supporters inspired the ALS Ice Bucket Challenge to go viral, raising $220 million for the ALS Association and its global partners.
Peter passed this past December 2019, we continue raise money for the Peter Frates Family Foundation to assist other ALS patients who wish to stay at home with loved ones.
Robert Coughlin – President and CEO at MassBio
As President and CEO of the Massachusetts Biotechnology Council, Bob’s mission is to advance Massachusetts’ leadership in the life sciences to grow the industry, add value to the healthcare system and improve patient lives. Over the last decade, Bob has truly become a champion for patients by ensuring innovative companies have the best environment possible to research, develop, and commercialize breakthrough therapies and cures for people around the world who need and deserve them.
Bob has spent his career in both the public and private sectors. Before joining MassBio, he served as the Undersecretary of Economic Development within Governor Deval Patrick’s administration, where he prioritized both healthcare and economic development issues and was a strong advocate for the life sciences industry in Massachusetts. Prior to that, he was elected as State Representative to the 11th Norfolk district for three terms. Bob has also held senior executive positions in the environmental services, capital management and venture capital industries.
Brian Loew – CEO of Inspire
Brian created Inspire in 2005 with the goal of accelerating medical progress through engaged patients and caregivers in safe, trusted online social networks. Brian is a frequent speaker and writer on the topics of health-focused social networks and digital health. He sits on the boards of the Robert Packard Center for ALS Research at Johns Hopkins, and New Jersey Goals of Care, and was a “Red Jacket” recipient from PharmaVOICE magazine for his contributions to the industry.
Dave Bjork – Director of Community Relation, FRAXA Research Foundation
Bjork, of Georgetown, Mass., has more than 17 years of progressive experience in nonprofit marketing and fundraising leadership roles including Vice President of Development, National Foundation for Cancer Research, Bethesda, MD. In this role, he launched several fundraising programs and became known as the “Cancer Research Evangelist” because of his dedication and commitment to basic scientific research. Bjork has made it his life mission to connect individuals, businesses, academic institutions and other key influencers to forge strong partnerships to focus on researchers being funded so they can deliver life changing advances. “Funding research directly and fully is the most powerful way to cure disease,” said Bjork.
Lindsey Smith – Director of Investor Relations & Corporate Communications, Corbus Pharmaceuticals
Lindsey Smith works at Corbus Pharmaceuticals managing corporate communications and supporting investor relations initiatives. Corbus is focused on the development and commercialization of novel therapeutics to treat inflammatory, fibrotic and metabolic diseases. She is responsible for internal and external communications, including patient engagement and advocacy, social media, corporate branding and media relations. Prior to joining Corbus in January 2018, Lindsey held various positions at Alkermes, a biopharmaceutical company developing medicines for the treatment of central nervous system diseases, in the corporate communications department. Lindsey serves on the marketing committee of Healthcare Businesswomen’s Association and is a member of the National Investor Relations Institute. She earned a Bachelor of Science in television-radio with a concentration on international communications from Ithaca College.
Michael Walsh – President and CEO, Patient Advocacy Strategies
Michael Walsh has spent his entire career of 22 years in the Life Sciences industry serving in a multitude of roles. He has held Patient and Key Opinion Leader Advocacy leadership roles across a number of disease areas at MedImmune, Biogen, InterMune, and Genentech.He currently serves on the Board of the Prescription Process Advocacy Network and has served on the Board of Directors for the MA March Of Dimes, Co-Chair of the MassBio Marketing & Communications Committee and the MassBio Patient Advocacy Task Force.
Rob Schultz – Partnership Growth Manager, Inspire
Robert Schultz works at the intersection of patient advocacy and innovation. He leads partnership growth at Inspire.com where he collaborates with many different types of stakeholder groups. Last year he founded Boston InnoTours to help foreign stakeholders navigate the Boston innovation ecosystem.
In 2013, with a successful tech sales background, but little healthcare experience, Robert co-founded Aware Engineering with guidance from the Massachusetts Biotechnology Council’s MassCONNECT program. He developed a patient monitoring platform product in collaboration with the cystic fibrosis community and discovered the blueprint for patient advocacy success was to collaborate with nonprofit organizations who are the catalysts for innovation. For patients and families, innovation is hope.
Seth Rotberg – Patient Engagement Manager, Inspire.com and Founder, Our Odyssey
Seth is a motivational speaker and rare disease advocate who is passionate about using his personal experience to support the health community. He is the Patient Engagement Manager at Inspire and Co-Founder of Our Odyssey. His passion is driven by his mother’s 17-year battle with the rare, genetic disease known as Huntington’s Disease (HD). At the age of 20, Seth also tested positive for the disease and is a gene carrier. He has been involved in the HD community for over 10 years He is a nonprofit leader with 10+ years of experience in patient advocacy within the rare disease space. He has a successful track-record of public speaking and community engagement, including a talk at TEDxNatick.Seth shifted his focus to support young people because he knows the importance of helping others find the proper resources to help deal with the everyday challenges. His hope is to be a mentor for young people who face adversity by sharing how taking control of his Huntington’s Disease journey has given him opportunity, fulfillment, and hope.
Inspire is the leading health community, with a mission to accelerate medical progress through a world of connected patients. More than two million patients and caregivers unite through Inspire to safely share health experiences and find genuine support in a vital online community. The company helps the life science industry integrate patient centricity into the pharmaceutical product lifecycle, from clinical trial design and recruitment to post-marketing brand/unbranded activities.