Voices of Value Speak Up: Spotlight Osteoporosis is a patient education event for people living with osteoporosis and their caregivers. Please join us in Los Angeles where we’ll bring together patients, advocates, medical experts and policy leaders to offer a comprehensive look at the treatment access challenges facing osteoporosis patients, the innovation needed for their well-being and survival, and the reforms that would enhance and hopefully extend their lives.
Voices of Value Speak Up was developed to provide tools and teaching for patients and advocates with the desire to learn new ways to navigate an increasingly complex health care system and help to ensure that the patient voice isn’t muted when regulatory decisions and policy choices are made. Barriers to access are real, and often similar across disease states, but there are also unique challenges faced by patients within specific diseases – especially for a chronic disease like osteoporosis.
Co-Founder and Policy Director, Patients Rising
Jonathan leads the strategic and policy direction for Patients Rising, a non-profit advocacy organization that fights for access to vital therapies and services for patients with life-threatening and chronic diseases. Jonathan has been a featured on-air commentator for ABC News, NBC News, Fox News Channel, CNN, several national radio programs and international networks. His editorial commentaries have been featured in Investor’s Business Daily, National Review, Sacramento Bee, Los Angeles Daily News, San Francisco Chronicle, Washington Times, Houston Chronicle, Dallas Morning News and Cleveland Plain Dealer.
Patient & Comedian
Nicole Dalton is an Actress, Comic, and Advocate for people living with Autoimmune Diseases, specifically: Systemic Idiopathic Juvenile Rheumatoid. Diagnosed at age 13, Nicole has been living with this disease for over 27 years. Nicole’s SJIA is acute and chronic forcing her to become a true collaborator in her care and to garner as much knowledge as possible regarding the illness, medications, holistic treat options, and various doctors approaches. She has had multi-organ involvement, which has given her a unique perspective on the processes of various autoimmune diseases from the patient’s standpoint.
She has seen incredible innovations for the treatments for these illnesses over the years and she believes we can do more. We have to do more. Nicole has appeared on FOX, CBS, TBS, NBC, COMEDY CENTRAL, THE HALLMARK CHANNEL, TV LAND, and she was most recently on NCIS: LA. Nicole performs her stand-up as a way of educating and advocating, through laughter.
Dr. Stuart Silverman
Medical Director, Cedars-Sinai Bone Center of Excellence
Dr. Stuart Silverman, who is board-certified in internal medicine, rheumatology and allergy immunology, currently serves as Clinical Professor of Medicine at University of California Los Angeles, David Geffen School of Medicine and Medical Director at Cedars-Sinai Medical Center.
Recognized internationally for his lectures on fibromyalgia and bone disease, Dr. Silverman developed the Osteoporosis Assessment Questionnaire, the first disease targeted measure of quality of life in osteoporosis. He is a member of the council of scientific advisors of the International Osteoporosis Foundation and represents the American Society of Bone and Mineral Research to the Interspecialty Council of the National Osteoporosis Foundation and is a member of the NBHA working group on the efficacy and effectiveness of osteoporosis therapies.
Social Entrepreneur & Co-Founder of CreakyBones
After running a successful international public relations, advertising, and marketing company, Louis Tharp became a social entrepreneur in 1999.
He co-founded CreakyJoints, an international service organization and social media site for people with arthritis, RedPatch, an advocacy organization for people with psoriasis, and CreakyBones, a social networking site for people with osteoporosis. All of these advocacy groups are now a part of the Global Healthy Living Foundation, a 501(c)(3) non-profit patient advocacy an access to care organization. Louis is passionate about eliminating fail first practices within the healthcare industry, the policy that forces patients to fail on insurer-specified medications before they can take the prescription drugs their physicians prescribe.
Acting Executive Director, National Bone Health Alliance
Ms. Zeldow joined the National Bone Health Alliance in 2013 and oversees the organization’s Fracture Liaison Service portfolio including; FLS Demonstration Project, Fracture Prevention CENTRAL, and the FLS Reimbursement Working Group.
Her more than two decades of non-profit management experience includes service as Chief Operating Officer for the Alliance for Aging Research. She has also held staff positions with the American Institute for Cancer Research and the National Association of County and City Health Officials. Ms. Zeldow holds an MBA from the Johns Hopkins University and BA from The American University.
Patients: Lisa Tent & Robert Breech
Patients Living with Osteoporosis
Lisa Tent and Robert Breech will share the patient’s perspective on living with osteoporosis. They were both caught completely off guard as they were diagnosed right after completeing a major hike. Theyhave both had access to their life-saving treatment, but both patients recognize the need for ongoing innovation in osteoporosis treatments.
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