The Compassionate Care ALS Lighthouse Project
About The Lighthouse Project
We are honored to present to our community an important collaboration between Dr. Richard Bedlack, a leading researcher on ALS and Director of the Duke University ALS Clinic, and Compassionate Care ALS. It is called the Lighthouse Project.
Ron Hoffman, CCALS Founder and Executive Director, became a friend and colleague of Dr. Bedlack’s many years ago. They have worked together with a number of Dr. Bedlack’s families from the Duke ALS Clinic.
Through this project CCALS provides 30 minute conversations with Dr. Bedlack who will try to give personalized answers to questions that ALS patients are not getting answered by their own doctors or from the many online educational resources that are now available. Information provided in these Zoom call conversations is for informational purposes only, does not constitute medical treatment in any way and no patient-physician relationship is created through or as the result of the conversation. No information in these calls are physician-patient privileged information and it is not treated as Protected Health Information under the Health Insurance Portability and Accountability Act of 1996.
These calls are educational and designed to empower patients with new ideas they can take to their own doctor for specific advice. After each call, patients will receive a written summary with suggestions for further reading from vetted references.
To schedule an appointment contact Christopher Cooley at christopher@ccals.org.
About Dr. Richard Bedlack
Dr. Richard Bedlack grew up in a small town in central Connecticut. He went to college at William and Mary in Virginia, then back to Connecticut for an MD and Ph.D. in Neuroscience at UConn. Finally, he came to Duke where he completed his Medicine Internship, Neurology Residency, Neuromuscular Fellowship, and Masters in Clinical Research Science. He is currently a Professor of Neurology at Duke and Director of the Duke ALS Clinic. He has won awards for teaching and patient care, including best Neurology teacher at Duke, Health Care Hero, Strength Hope, and Caring Award, America’s Best Doctor, the American Academy of Neurology Patient Advocate of the Year, and the Rasmussen ALS Patient Advocate of the Year. He has received ALS research grants, participated in ALS clinical trials, published more than 100 ALS articles. He is the leader of the international ALSUntangled program which utilizes social networking to investigate alternative and off-label treatment options for patients with ALS, and leader of the ALS Reversals program which attempts to understand why some people with ALS recover from it, and to make this happen more often. He lives in Durham, North Carolina with his wife Shelly and two mischievous cats.
