Conference Reports 2011-2012
Northeast ALS Consortium (NEALS) Annual Meeting
Clearwater, FL, October 26-28
The NEALS Tenth Annual Meeting in Clearwater Beach, FL was attended by more than 200 clinicians, researchers, pharmaceutical and biotech company representatives and associations. Emphasis was on past, current and future clinical trials--their design, purpose, training and implementation in ways that provide greater benefit for the patient community. Focus was also centered on the continuing evolution of the genetics behind ALS/MND. Co-chaired by Dr. Jeremy Shefner, Chair of Neurology at Upstate Medical University, Syracuse, NY and Dr Merit Cudkowicz, this four-day conference was suberb both in its content and presentation. Of particular interest was an intensive and extensive science update by Drs. Robert Brown (U. Mass) and Jeffrey Rothstein (Johns Hopkins).
Of special note was the uniques and compelling presentation, Medical Ethics, by Dr. James Russell of the Lahey Clinic in Burlington MA, available in power point for your review. We believe you'll find it extremely valuable as did we. Dr Russell's message is more relevant today than at any other time. As we all face the rigors of declining medical benefit payments, increased medical expenses and the complexities of merging new information with old problems of ALS, we urge a careful review of Dr Russell's excellent discussion.
ALS Clinical Research Learning Institute (ALS-CRLI) Conference
Clearwater FL, October 28-29
The following day, The First Annual ALS Clinical Research Learning Institute was held. Organized and co-chaired by Drs. Rick Bedlack and Merit Cudkowicz. This conference, modeled after similar programs for the cancer and Parkinson's Disease communities, launched the initial training of a small group of patient and caregiver teams to both understand and advocate for more complete, purposeful ALS research. Suggested advocacy tools include blogging, speaking to support groups, writing newspapers and congresspersons, something everyone can become involved in. The more vocal each of us becomes, the more informed the general public becomes, the more likely it is that more research dollars will be invested in ALS. Ideas were shared by ALSA Lucie Bruijn, Richard Bedlack, Douglas Kerr of Biogen Idec, MDA Scott Weibe and ALSWW Stephen Byer. Of special note is the Medical Ethics presentation by Dr. James Russell of the Lahey Clinic in Burlington MA, available in power point for your review. We believe you'll find it extremely valuable as did we.
Suggestion: We can and should all become involved in advocacy. If you want to participate by writing a blog, sending emails and letters, or giving a presentation to an organization, let others know about your efforts on the Clinical Research Advocacy Blog so they can be included and shared through the NEALS website. Let ALS WORLDWIDE know too! Knowledge is power.
Beckman Research Institute at City of Hope Symposium
Duarte, CA, November 9-10
The Third Annual City of Hope Stem Cell Symposium, organized by Dr. Richard Jove, Director of City of Hope Beckman Research Institute in Duarte, CA, focused on the innovative partnership between Beckman Research Institute and several organizations in Israel in their mutual quest to bring stem cell therapy to the forefront of medical treatment for many conditions and diseases at the earliest possible time. Sponsored also by the California Institute for Regenerative Medicine, this session brought together the outstanding stem cell scientist clinicians and researchers, including Drs. Mahendra Rao of National Institutes of Health, Jonathan Thomas of CIRM, Benjamin Reubinoff and Tamir Ben-Hur of Hadassah Hospital in Jerusalem, Joseph Itskovitz-Eldor of the Technion Israel Institute of Technology.
Unable to be in two places at once, Stephen Byer gave a one hour telephone presentation to the Eighth International conference on Plant Medicine in Coral Gables, Florida on November 9 at 6 am. The discussion focused on the more than 60 major clusters of disporportionately higher than normal incidences of ALS currently being investigated and analyzed by ALS WORLDWIDE.