Meet the #PATIENTDRIVEN® Speakers of our 2019 Patient Advocacy Summit!
By Laura Rudberg, Manager of Events at MassBio
MassBio’s most popular event of the year, the Patient Advocacy Summit, returns November 6th at the Marriott Cambridge. To set the stage for the experts and patient advocates that will join us in November, here are some facts about our speakers and the impact they’ve had on the industry:
Freda C. Lewis-Hall, Chief Patient Officer and Executive Vice President Pfizer Inc launched the industry’s first public compassionate use request portal, PfizerCARES, and was named one of 2019's “Most Powerful Women in Business” by Black Enterprise.
Mark Dant, Chairman of the Board, Everylife Foundation founded The Ryan Foundation in 1992 with a bake sale, named after their only child who was diagnosed with MPS I. Today, Mark’s son, at age 30, has been treated for MPS I for longer than any other MPS I patient in the world, and the foundation has raised millions in rare disease research.
Khrystal K. Davis, Founder & President of Texas Rare Alliance & Advisory Committee Member, Texas Newborn Screening is a published author. Her book, Hunt for a Cure, details her journey to find a cure for her son with spinal muscular atrophy (SMA) and how she had to challenge the current health care system to do so. At 16 weeks her son began receiving treatment in Mexico – before any other patient in the US.
Sarah Pitluck, Head of Global Pricing & Reimbursement, Spark Therapeutics, Inc priced the first FDA-approved gene therapy for blindness, LUXTURNA®, for patients with genetic retinal disease.
Kim Stephens, President, Project Alive is just the second president of Project Alive, leading the organization to its $2.5 million fundraising goal to pay for a gene therapy trial with the potential to cure Hunter Syndrome. As of June, the organization was $150,000 short of its goal.
Glenda Thomas, Professional Daily Money Manager, nCeptive – DMM was diagnosed with myasthenia gravis in 2013 and since then has become the MGFA support leader for all of New England. Outside of work and patient advocacy, Glenda books musicians at local venues throughout MetroWest Boston.
Don’t miss your chance to see these speakers, hear their stories, and find out what it means to be #PATIENTDRIVEN®. Register today for our Patient Advocacy Summit.