BioNJ to Honor Patient Advocacy Leaders at Annual Meeting Thursday

NFL Hall of Famer Nick Buoniconti, NORD, John Crowley of Amicus, Dr. Wise Young of Rutgers to Receive Leadership Recognition

TRENTON, N.J.--()--BioNJ will honor the first recipients of its Patient Advocate Award tomorrow evening at the BioNJ 21st Annual Dinner Meeting and Networking Event, recognizing outstanding leadership efforts to represent patient interests in the biotechnology and pharmaceutical industries, scientific research and public arenas.

Honorees include National Football League Hall of Famer Nick Buoniconti, who founded two organizations targeting paralysis and is the keynote speaker for the meeting; John F. Crowley, Chairman and CEO of Amicus Therapeutics, Inc.; the National Organization for Rare Disorders (NORD), who will be represented by NORD President and CEO Peter L. Saltonstall; and Wise Young, M.D., Ph.D., director of the W.M. Keck Center for Collaborative Neuroscience and a professor at Rutgers University.

“Patient advocacy has never been more important than it is today and our honorees exemplify the commitment necessary to ensure patients’ needs remain a top priority in life science companies,” said BioNJ Chairman Francois Nader, M.D., President and CEO of NPS Pharmaceuticals, Inc. “It is critical for our industry to foster relationships with patients, their caregivers, and the disease-specific nonprofit advocacy groups that support them. These interactions ensure the voice of the patient is always understood.”

Since 2012, BioNJ has been increasingly focused on partnering with a diverse group of patient advocates, researchers, health care providers, government officials and companies in an effort to help companies implement patient-advocacy initiatives in their organizations. The awards ceremony to be held at the Hilton East Brunswick is the latest segment of an initiative that includes an industry survey and educational outreach. With the assistance of Merrill DataSite, the Patient Advocacy Committee at BioNJ has developed the white paper, Patient Advocacy: An emerging role within pharma and biotechnology, which will be released during the Annual Meeting.

“Patient advocacy is truly central to helping companies humanize rare disorders,” said BioNJ President and CEO Debbie Hart. “Although still an emerging discipline in many companies, patient advocacy allows industry to focus on unmet medical needs. Our honorees serve as shining examples of the impact that can be achieved through patient advocacy.”

After winning two Super Bowl championships in his NFL career with the Miami Dolphins, Buoniconti enjoyed significant success in broadcasting and the corporate world. Since his son Marc suffered a devastating spinal cord injury in 1985, he has focused most of his attention on raising awareness of, and funds for, spinal cord injury research. He helped found, and serves as a national spokesman and fundraiser for The Miami Project to Cure Paralysis. He and his family also founded The Buoniconti Fund to Cure Paralysis to help The Miami Project achieve its national and international goal of finding a cure for spinal cord injuries.

Crowley’s involvement with biotechnology stems from the 1998 diagnosis of two of his children with Pompe disease, a severe and often fatal neuromuscular disorder. In his drive to find a cure for them, he left his position at Bristol-Myers Squibb and became an entrepreneur as the co-founder, president and CEO of Novazyme Pharmaceuticals, a biotech start-up conducting research on a new experimental treatment for Pompe disease, which he credits with ultimately saving his children’s lives. John and his family are the subjects of a book by Pulitzer prize-winning journalist Geeta Anand and the major motion picture, Extraordinary Measures, is inspired by their journey. Crowley continues his life mission as Chairman and CEO of Amicus Therapeutics.

NORD is a federation of health organizations dedicated to helping people with rare diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Saltonstall joined NORD in 2008 after having served for more than 30 years as a senior official in both for-profit and not-for-profit healthcare environments. Under his leadership, NORD has forged new relationships between the patient community and Congress, government agencies and drug/device companies and the medical/academic and investment communities.

Dr. Young is recognized as one of the world’s outstanding neuroscientists. Among his many accomplishments, Dr. Young was part of the team that discovered and established high-dose methylprednisolone as the first effective therapy for spinal cord injuries, challenging the notion that spinal cord injuries were permanent, refocused research, and opened new vistas of hope. Dr. Young founded and served as editor-in-chief of the Journal of Neurotrauma. He organized the National and International Neurotrauma Societies as forums for scientists to share discoveries and collaborate on spinal cord injury and brain research. He is committed to bringing treatments to people with chronic spinal cord injuries.

About the BioNJ Annual Dinner Meeting

Working from a new theme, Let’s Get it Started, BioNJ’s Annual Dinner Meeting is considered the “Kickoff” event of the year for the life science industry. Because patients can’t wait, the goal of our 21st Annual Dinner Meeting is to reaffirm the life science community’s commitment to discovering and developing cures to address unmet medical needs. Growing in prominence with each year, BioNJ’s Annual Dinner Meeting attracts upwards of 700 attendees from biotechnology and pharmaceutical companies, professional service providers, government officials, academic leaders and others for an evening of networking, business discussions and education. For more information on the meeting, please visit http://www.bionj.org/2014adm/2014-annual-dinner-meeting.

About the Dr. Sol J. Baer Award

The 2014 Dr. Sol J. Barer Award for Vision, Innovation, and Leadership will be presented during the BioNJ Annual Dinner Meeting to Stuart W. Peltz, Ph.D., Chief Executive Officer of PTC Therapeutics (NASDAQ: PTCT) of South Plainfield, NJ. Named for Sol J. Barer, Ph.D., founder and former chairman and chief executive officer of Celgene Corporation of Summit, N.J., the award recognizes outstanding research and business leaders who have made significant contributions to the growth and prosperity of the biosciences industry in New Jersey and throughout the world.

About BioNJ

With more than 300 member companies, BioNJ is focused on the growth and prosperity of New Jersey’s life sciences cluster. Founded in 1994 by New Jersey industry CEOs, BioNJ serves as the voice of companies located in New Jersey, seeks to advance their economic growth and development and works to encourage new and established companies from around the world to locate in New Jersey. BioNJ represents companies engaged in biopharmaceutical, biomedical, bioagricultural and bioremedial endeavors.

Contacts

MEDIA:
Bill O’Donnell
BioNJ
(609) 890-3185, Ext. 117
(609) 802-3091
Bodonnell@bionj.org
or
Fred Feiner
Yankee Public Relations
(908) 425-4878
fred@yankeepr.com

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Contacts

MEDIA:
Bill O’Donnell
BioNJ
(609) 890-3185, Ext. 117
(609) 802-3091
Bodonnell@bionj.org
or
Fred Feiner
Yankee Public Relations
(908) 425-4878
fred@yankeepr.com