Patient Advocacy Panel: When Patients & Industry Collaborate, Good Things Happen

Wednesday, January 30 2013
8:00 am – 10:00 am

Location: MassBio, 300 Technology Square, 8th Floor, Cambridge, MA

The important role of advocacy is vital to the orphan disease space (Tay-Sachs) as well as other patient/parent groups (premature infants). This event will highlight three very tangible action-oriented examples of partnerships with patient groups. Millennium’s discussion will focus on their patient programs and provide an overview of components and metrics associated with their success. Genzyme will discuss the important role of advocacy within the orphan disease space.  One specific partnership will be highlighted where, while no treatment is available, Genzyme and the patient group have had a successful collaboration that has spanned decades with mutual benefit.  MedImmune will highlight their collaboration with the New England Fragile Beginnings Preemie Parent Alliance that brings together a multitude of stakeholders to improve health outcomes for preterm infants and provide education and empowerment to the parents and caregivers. Mark your calendar, don’t miss this engaging and important discussion.

Moderator:

  • Bob Coughlin, President & CEO, MassBio

Speakers:

  • Kathleen Coolidge, Associate Director, Patient Advocacy-Rare Diseases, Genzyme Corporation
  • Kathy Gram, Associate Director, Corporate Communications, Patient Advocacy, Millennium: The Takeda Oncology Company
  • Susan R. Kahn, Executive Director, National Tay-Sachs & Allied Diseases Association, Inc.
  • Kathryn Marous, Leader, Fragile Beginnings Preemie Parent Alliance; Family Team Specialist, March of Dimes
  • Michael Walsh, Advocacy Development Manager, MedImmune, Inc.

Speaker Bios:

Kathleen Coolidge joined Genzyme, a Sanofi company,  in 1997 initially as a case manager working directly with patients and families with rare Lysosomal Storage Disorders in order to help them access care.  Kathleen then became the Associate Director of Genzyme’s Patient and Product Services and later joined Genzyme’s Patient Advocacy group in 2007.  Kathleen is responsible for working with numerous rare disease patient organizations across the United States. Prior to joining Genzyme, she worked as a social worker at Tufts Medical Center in Pediatrics.   Kathleen has an MSW from the University of Washington, Seattle, Washington.

Bob Coughlin is President & CEO of MassBio. Bob has spent his career in both the public and private sectors, most recently serving as Undersecretary of Economic Development within Governor Deval Patrick's administration in 2007. Throughout his career, Bob has been active in the community, having served on the boards of the Massachusetts Maritime Academy and Beth Israel Deaconess Hospital. He has served as the honorary chairman of the Great Strides Cystic Fibrosis Walk since 1996 and is a past co-chair of the Children’s Hospital Boston signature event, Champions for Children’s. Bob volunteers his time to serve on the Board of Directors of the Cystic Fibrosis Foundation and is a long time patient advocate.

Kathy Gram is an RN, BSN with over 25 years in the healthcare industry. She spent the majority of her career in the home infusion industry in sales, sales management, general management and as the VP of Sales for Chartwell Home Therapies (a joint venture between MGH and New England Medical Center). She was the Director of Biotech Sales for Caremark (now CVS Caremark) followed by VP of Sales for Panel Intelligence, a medical market research company founded by an oncologist from the Dana-Farber Cancer Institute. She is a recent cancer survivor and remains passionate about the patient community which she can support through her role in Patient Advocacy at Millennium. She is a proud mother of 2 wonderful boys that have been actively involved in her fundraising for several organizations hoping to find a cure.

Susan Kahn joined National Tay-Sachs & Allied Diseases Association (NTSAD) as Executive Director in 2008.  NTSAD celebrated its 55thanniversary in 2012 as one of the oldest patient advocacy groups for genetic diseases. Sue learned about NTSAD while working at Genzyme Genetics, where she was Senior Director of Business Development.  In that role, she was responsible for strategy development, new product assessment, and technology licensing.  Before Genzyme, Sue worked in various business development, finance and general management roles at Chiron Diagnostics (now part of Siemens).  Sue has an MBA from the Amos Tuck School of Business Administration and a bachelor’s degree in applied mathematics–economics from Brown University.   

Kathryn Marous is a mother who has volunteered for children's health causes since the premature birth of her triplets in 2001.  Her oldest child, Julia, died of respiratory distress her first day of life. The surviving triplets, Peter and Lucy, spent four months in the Newborn Intensive Care Unit and were ventilated two of those months. Prior to the birth of her children, Kathryn practiced law in Boston and Worcester, Massachusetts.  She is currently employed by the March of Dimes working with families that have struggled with their baby's health.  Prior to and concurrent with her employment with the March of Dimes, she has been its Central Massachusetts Board Chair and a member of Jewish Family and Children's Services Fragile Beginnings Preemie Parent Alliance, Beth Israel Deaconess Medical Center's Newborn Intensive Care Unit Advisory Board, UMass Memorial Children's Medical Center's Pediatric Intensive Care Unit's Family Centered Care Committee and Franciscan Hospital for Children's Parent Advisory Committee.

Mike Walsh is an innovative biotech professional with over 15 years of proven success in the life science industry across most functions within commercial operations.  He currently serves as Advocacy Development Manager at MedImmune, the global biologics division of AstrazZeneca and is responsible for collaborations with third-party stakeholders who support pre-term infants. The aim of these partnerships is to educate, empower and engage advocacy partners to galvanize collective action around issues that impact the patient population thereby improving health outcomes. Prior to his role at MedImmune, Mike served in many different Sales and Marketing roles at Amgen. He serves on several boards including the Massachusetts chapter of the March of Dimes. Mike and his family of 5 live just outside Boston, in Winchester, where he is active in the community.

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