Our scientific director, Suzanne D. Vernon, PhD, has dedicated the majority of her professional career to studying CFS and bridging gaps in our scientific understanding of it. It’s more than just an occupation for Suzanne, it’s a personal passion. From the podium at scientific meetings to the steep and narrow trail at a 24-hour bike race organized to solve CFS, her leadership of the Association’s research program is recognized and lauded by researcher-colleagues, patients and advocates alike. Here is a brief summary of some of ways in which Suzanne has been orchestrating transformation over the past year.
Sponsored Research Program
- Closely monitored grantees’ performance milestones and outcomes. (See http://bit.ly/ub9oQ1.)
- Developed and widely circulated new Request for Applications (RFA). (See http://bit.ly/el3Qnl.)
- Explored various data-sharing platforms and policies and other institutions’ policies on intellectual property to foster discovery and development of promising findings.
- Reviewed Letters of Intent and issued invitations and declinations to investigators who submitted letters of intent.
- Distributed revised policies and addressed questions from invited applicants and their respective institutions.
- Recruited dozens of qualified reviewers to evaluate the scientific and strategic merit of proposals due Sept. 30.
- Conducted review of scientific merit of proposals. Evaluation of strategic merit and overall fundability is now under way.
- Oversaw the conversion of the collection of extensive medical history and clinical data from BioBank participants from a paperbased system to a secure online system. (See .)
- Completed the first collaborative study using BioBank resources, data for which is being analyzed and prepared for publication.
- Received three new applications to utilize BioBank resources. One was approved; one was declined and one is pending review by the Medical Research Advisory Committee.
- Served as a member of the NIH ME/CFS State of the Knowledge Workshop planning group. (See http://bit.ly/jWb6s0)
- Participated in several group discussions as follow-up to the need for a centralized data-sharing platform, the working name for which is CASA — Collection, Aggregation, Storage and Analysis. Dr. Dennis Mangan, formerly of the National Institutes of Health, presented ideas for this platform at the IACFS/ME conference. (See The CASA Project – Sept 2011)
- Participated in two XMRV-related working groups including the Blood XMRV Scientific Research Working Group that published results of a multi-lab study of XMRV in samples collected from CFS patients and blood donors. (See http://bit.ly/reVtOT.) CEO Kim McCleary participates in two other XMRV-related working groups.
- Consulted with a biotech company to develop a biomarker proposal in response to the Department of Defense Congressionally Directed Medical Research Program (CDMRP).
- Developed five research funding proposals submitted to other institutions, all of which are collaborations with other investigators and organizations.
- Helped identify clinical collaborators for a Phase II clinical trial of a promising therapy being planned by an academic center.
- Served as a peer-reviewer for several CFS-related grant applications and manuscripts.
Presentations and Meetings
- Participated in the meeting of collaborators for the study of XMRV being led by Dr. Ian Lipkin. (Dec. 20, 2010) (See http://bit.ly/qz5xOG.)
- Provided an overall summary of research, existing gaps, areas of agreement and needed next steps at the ME/CFS State of the Knowledge Workshop. (April 7–8) (See http://bit.ly/jWb6s0)
- Delivered public testimony at the DHHS CFS Advisory Committee meeting, along with CEO Kim McCleary and Board members Jennifer M. Spotila, J.D., and Amy Squires. (May 10–11) (See http://bit.ly/ta5NWP.)
- Gave a presentation on CFS and chaired a session at the 6th Annual TMJ Association Scientific Meeting on Co-Morbid Conditions. (June 5–7) (See http://bit.ly/vqhKIn.)
- Spoke to participants, volunteers, donors and sponsors about CFS at the second annual 24 Hours in the Enchanted Forest. (June 17–19) (See video by CFS patient Ken Holmes: http://vimeo.com/26042017)
- Delivered three presentations on biobanking at the Genetic Alliance 25th Annual Conference. (June 23–26)
- Gave a series of presentations in Sweden, including a half-day seminar with other CFS experts at the Ministry of Health and a program for doctoral students at the University of Umea. (Aug. 22–26) (See http://bit.ly/qdZDNs.)
- Led a joint meeting of the Association's Scientific Advisory Board and Board of Directors. (Sept. 25-27)
- Participated in an invitation-only meeting sponsored by the National Heart, Lung and Blood Institute about emerging infections and blood safety. (Nov. 7)
- Attended the DHHS CFS Advisory Committee meeting. (Nov. 8-9)
- Will speak to members of the Rocky Mountain CFS/ME & FM Association in Denver, Colo., on Dec. 6. More info: http://www.rmcfa.org/event.html
- Provided more than a dozen media interviews and authored numerous articles for Association publications. You find some of them here: http://bit.ly/s4awNy.