The last day of February has been designated as Rare Disease Day in Massachusetts to call attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world. The event recognizes Rare Disease Day and the research being done in Massachusetts to treat and cure rare disease. Alone we are rare, together we are strong. Our agenda feature two panels with different points of view of the issue: a patient panel, which will discuss the struggles beyond diagnosis and treatment; and an industry panel, which will focus on how the biotech and pharma industry is going beyond treatment to healing the whole patient, as well as supporting the caregivers.
Muscular Dystrophy Massachusetts State Ambassador, and business owner of Girls Chronically Rock
Keisha Greaves is a motivational speaker, the founder of Girls Chronically Rock, and the Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). Girls Chronically Rock (www.girlschronicallyrock.com) offers inspired fashion celebrating Muscular Dystrophy and other chronic illnesses. Over the past few years, Keisha has been featured in Improper Bostonian, Boston Voyager, Herself 360, Liz on Biz, among other outlets on and offline. She’s lent her voice to audiences at the Spaulding Rehabilitation Center in Charlestown, Massachusetts General Hospital, the Boston Muscle Walk, local “Fill the Boot” events, Cambridge City Hall, and, most recently, Girl’s Night Out for Muscular Dystrophy – a Boston-area fundraising event held by NextonScene.
Chairman and Chief Executive Officer, Eloxx Pharmaceuticals
Mr. Robert (Bob) E. Ward is the Chairman of the Board and Chief Executive Officer of Eloxx Pharmaceuticals, Inc. (“Eloxx”). He previously served as the Chief Executive Officer and President at Radius Health, Inc., successfully completing the initial public offering that became the top performing IPO in 2014; raised over $780M from private and public sources; achieved FDA approval and launch of the new drug TYMLOS™ while also gaining Fast Track development status for the Elacestrant oncology program.
Prior to joining Radius, Mr. Ward held a series of progressive management and executive roles with established companies such as NPS Pharmaceuticals, Schering-Plough (Merck), Pharmacia (Pfizer), Bristol-Myers Squibb and Genentech. Mr. Ward has been a Director of Akari Therapeutics, Plc since October 2016 where he chairs the Governance Committee. He served as a Director of Radius from December 2013 until July 2017. Mr. Ward serves as a Director of the Massachusetts High Technology Council. Mr. Ward received a B.A. in Biology and a B.S. in Physiological Psychology, both from the University of California, Santa Barbara, an M.S. in Management from the New Jersey Institute of Technology and an M.A. in Immunology from the Johns Hopkins University School of Medicine.
VP, and Global Head & General Manager, TTR and Cardiometabolic Franchises
Molly Harper has extensive experience in all phases of pre-launch market development and global biopharmaceutical commercial operations, and leads Akcea’s global expansion strategies. Ms. Harper joined Akcea in April 2015 and serves as Vice President, Global Head and General Manager in the TTR and Cardiometabolic Franchises. She is responsible for all aspects of the volanesorsen business in addition to the commercialization strategy for Akcea’s cardiometabolic pipeline programs. She came to Akcea from the Rare Disease division of Genzyme, where she was Senior Director and Head of US Endocrinology. In her role, she was responsible for all commercial functions for several development programs and products, as well as management of a molecular diagnostic co-promotion program with Veracyte, Inc. Her earlier roles at Genzyme included Global and U.S. Marketing leads for the Endocrine and Cardiovascular businesses.
Prior to Genzyme, Ms. Harper was with Merck & Co., where she held positions in the Atherosclerosis and Acute Care franchises across marketing management, market research, and sales. She has also held positions in life sciences equity research at UBS Warburg and strategy consulting with The Wilkerson Group/IBM.
Ms. Harper has an MBA from The Wharton School of the University of Pennsylvania and she is a past board member of The Wharton Health Care Management Alumni Association and current board member of The Wharton Club of Boston. She also holds a BA from Cornell University.
Destiny Lomonte, Vascular Ehlers Danlos Warrior and Activist
My name is Destiny and I am 25 years old. I live with a disease called Ehlers-Danlos Syndrome, type 4, otherwise known as Vascular EDS. When I was 4 years old my intestine ruptured and that was when I was diagnosed with VEDS. Vascular Ehlers-Danlos Syndrome is a genetic disease that affects the organs, arteries, and other vascular areas in the body. It causes organ ruptures, dissections and aneurysms, and is often fatal. I suffer from multiple secondary conditions caused by VEDS such as gastroparesis (paralysis of the stomach) that I am now tube fed, a colostomy due to the rupture and removal of my colon, and I have a spinal cord injury. Despite all of this, I graduated college and now work as a crisis counselor. In my spare time, I work with my service dog and enjoy going hiking through the woods.
Duchenne’s Muscular Dystrophy Patient and advocate
Austin is a 20 year old sophomore , currently working on a mechanical engineering degree at Bunker Hill Community College. In his free time, he enjoys playing power soccer with his team in weekly practice and in games around the United states, and downhill skiing with his family. Austin has been a participant in clinical trials, is a volunteer on Parent Project Muscular Dystrophy’s Adult Patient Advisory Committee, and a member of the review board for certified duchenne care centers. Whenever possible, he uses his voice to elevate our DMD community and increase awareness of the need for approved drug therapies. Austin spoke at the first ever advisory committee meeting for a duchenne drug approval, has testified at congressional briefings and met directly with the FDA representing the duchenne community. As the subject of documentaries, including, To The Edge Of The Sky, Rare In Common, and Gene Doctors, and the recipient of the 2016 Meyer- Whaley instrument of change award , Austin has been committed to using his life situation to raise awareness for those living with rare disease. Practically, he would like to be involved in technology that can make the lives of those affected easier, and help to measure benefit in clinical trial setting so more non-ambulant young men will be able to participate and give valuable data.
Lisa is a seasoned advocate, motivational speaker and Co-Founder of Sisters@Heart Foundation. a nonprofit whose mission is to improve the lives of those affected by heart disease and stroke through funding research projects and providing financial assistance to heart and stroke families in need. She is also involved as a Committee Member in Rare New England, a nonprofit dedicated to spreading awareness and providing education to stakeholders in the rare disease community.
With her first being 20 years ago, Lisa has survived four strokes and was finally correctly diagnosed with Moyamoya Disease after her last stroke four years ago. Lisa underwent double brain surgery to treat her rare disease far from home to restore her health. For years, Lisa has engaged as an advocate, lobbyist and volunteer with the American Heart Association and has served as a Go Red for Women National Spokesperson. Today, Lisa speaks all over the country as a motivational survivor, patient advocate and stroke and heart health ambassador with hundreds of media engagements under her belt. Lisa lives in Massachusetts with her husband and two children. To learn more about Lisa, visit lisadeck.com or follow her on Facebook, Twitter and Instagram.