On a mission to Educate: SMCI continues to engage worldwide scientific leaders

pmwcThis month, SMCI chief scientific officer and vice president for research, Dr. Zaher Nahle, makes an east coast tour with two speaking engagements to world leaders in disease and biomedical research. In Washington DC, Dr. Nahle joined individuals from the Rare Disease Legislative Advocates and the Everylife Foundation to discuss the best ways in which scientists and policymakers must work together. The following week, Dr. Nahle chairs the exclusive panel called “ME/CFS: The Mysterious Illness Science has Yet to Unravel” with Dr. Anthony Komaroff of Harvard University and John Nicols, president and CEO of Codexis and an SMCI board member.

SMCI Leaders To Hold Panel at Precision Medicine World Conference

zaher-pmwcThe Precision Medicine World Conference is the leading forum for personalized medicine with prominent figures in the biotech industry and academic research drawing over 8,500 attendees. The 2017 conference at Duke University will be held on May 24-25 where the Solve ME/CFS Initiative (SMCI) is organizing a panel to discuss Myalgic Encephalomyelitis (ME). The panel chaired by Solve ME/CFS Initiative’s Chief Scientific Officer Dr. Zaher Nahle, and featuring leading expert and SMCI Research Advisory Council member Dr. Anthony Komaroff, and John Nicols President and CEO of Codexis Inc. and Vice Chair at the SMCI Board of Directors, will take place on May 24th.

This lively session will explore why precision medicine is fundamental in the fight against ME/CFS and how it can be used to clarify the elusive etiology of this disease. The panel also seeks to challenge the best and brightest researcher to solve this mysterious, debilitating disease that affects an estimated 2.5 million Americans.  This panel is part of a strategic SMCI effort to educate and recruit talented professionals in biomedical research and technology to find solutions to this disease.

To learn more about this panel, please visit: http://www.pmwcintl.com/2017duke/sessionthemes-mecfs-the-mysterious-illness-science-has-yet-to-unravel/

Dr. Nahle Teams Up With Legislative Advocacy Organization on Capitol Hill

Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA is a clearinghouse of ideas that is open to all members of the rare disease community with an interest in sharing information around common causes and advocating for the introduction or enactment of legislation. It does not promote any specific policy, but provides support to all rare disease organizations seeking introduction/enactment of legislation and is dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. Their motto is,“By growing the patient advocacy community and working collectively, we can amplify our many voices to ensure that rare disease patients are heard in state and federal government.”

Although ME/CFS is not a rare disease (defined as diseases with fewer than 200,000 patients), ME/CFS’ dire research situation has much in common with rare diseases.

Dr. Zaher Nahle, SMCI’s Chief Scientific Officer and VP for Research, joined this group for a legislative meeting. Dr. Nahle spoke about SMCI’s efforts in the ME/CFS research field and how advocacy and research must work in partnership by debunking the myths about ME/CFS and addressing different ways in which policy leaders and advocates can lead in this effort. Dr. Nahle also described SMCI’s collaborative and multi-faceted approach to seamless integration of research and advocacy, forming coalition partnerships, and creating a full 360-approach to solving ME/CFS.