Advocacy Blog
A Patients Perspective of Clinical Trial Benefits
Dorothy Leone-Glasser, RN, HHC, CEO Advocates for Responsible Care, Chair Ga Bio Patient Advocacy Alliance Clinical trials are essential for the development of new treatments for chronic illness patients. Every new medicine and treatment started with volunteers participating in clinical trials. Our current high standards of medical care and newly discovered therapies have improved the…
Read MoreThe Value of Support Groups
Dorothy Leone-Glasser, RN, HHC, CEO Advocates for Responsible Care, Chair Georgia Bio Patient Advocacy Alliance When I was diagnosed with systemic lupus erythematosus at 19 years, I discovered a major void in the treatment of chronic illness –support counseling to help patients understand and cope with the challenges of their disease. To bridge this gap…
Read MoreMichelle Kimberly Clark’s Story
Michelle Kimberly Clark Breast Cancer Survivor, Clinical Trials Patient Participant In May of 2013, while exercising Michelle felt a small mass on her left breast. In 2015, she met Andre (her husband), starting her life as a young, vibrant, African American woman. They moved to Atlanta and as Michelle states, she was “on her way to…
Read MoreKelly Barta’s Story
Kelly BartaCoalition of Skin Diseases, President After experiencing a prolonged and severe health crisis due to long-term use of topical steroids for eczema, Kelly became a passionate voice for those who were suffering. She was determined to bring change to the way eczema was understood and treated. Her advocacy efforts have led her to serve…
Read MoreChristopher Reed’s Story
J. Christopher Reed Lupus Foundation of America-Georgia Support Group Facilitator, Advocacy Chair Christopher was diagnosed with lupus in 1990 at the age of 16. Lupus attacked his heart, lungs, kidneys, digestive system, veins, and nervous system. Christopher’s lupus journey began with chronic headaches and frequent muscle spasms then progressed to frequent fevers, arthritis, and tremendous…
Read MoreBarbara Fleeman’s Story
Barbara Fleeman WomenHeart Champion; Support Group Facilitator Barbara grew up in Atlanta and moved back 6 years ago after spending 40 years building a successful career in entertainment consumer marketing/promotion. She was always very active in her personal and professional life. In 2013 she was diagnosed with severe pericarditis. Over the following 18 months. She…
Read MoreBioMarin Pharmaceutical commemorates 5 years of helping children with fatal rare disease
CLN2 Batten disease is a rare, inherited, fatal disorder that primarily affects the nervous system as a result of a failure to produce enough of the enzyme TPP1. The signs and symptoms of this condition typically start between the ages of 2 and 4, featuring recurrent seizures and coordination difficulty. BioMarin Pharmaceutical in San Rafael…
Read MoreSaol Therapeutics and InformedDNA Partner to Offer Genetic Counseling to Patients with Rare Mitochondrial Disease
Program Discusses Access to a Pivotal Phase 3 Trial of Dichloroacetate in Pyruvate Dehydrogenase Complex Deficiency (DCA/PDCD trial; NCT02616484) Saol Therapeutics, a company researching new treatments for rare diseases, is pleased to announce a partnership with InformedDNA®, the nation’s leading applied genomics solutions company, to offer genetic counseling for the families of individuals with a…
Read MoreCMS Decision is an Enormous Setback for Alzheimer’s Patients and a Dangerous Infringement on FDA’s Scientific Autonomy
Patients will suffer because of this bureaucratic and unnecessary second-guessing of the FDA, says BIO CEO. Dr. Michelle McMurry-Heath, President and CEO of the Biotechnology Innovation Organization (BIO), released the following statement in response to the Centers for Medicare and Medicaid Services’ (CMS’s) National Coverage Determination (NCD) to restrict coverage for drugs used to treat…
Read MorePotential drug for Alzheimer’s disease could block early damage, MCG researcher says
Most drugs proposed for Alzheimer’s disease target the gunk that accumulates in the brains of patients but fail to take enough away to make a difference or improve outcomes, said the head of the new Alzheimer’s Therapeutics Discovery program at Medical College of Georgia. It would be better to target a mechanism much earlier in…
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