[bostoncure.org] Status since May 15, 2002

[Art Mellor]

Boston Cure Project informal status since last reported on 5/15/02:

A lot to report happening in the past month. Here are some of the
highlights. 

>>> Joining Us This Month

o Stacy Schwartz
  Stacy is a summer intern from Harvard Business School. She's doing
  market analysis on the medical/healthcare system and documenting all
  the players and how they interrelate to each other. This document
  will allow us to understand the motivations and interactions of the
  various entities we need to deal with (from researchers, to
  insurance companies, to Big Pharma) so we can more efficiently
  navigate these choppy waters. Her paper will be made available on
  our web site when it is completed at the end of the summer. You can
  read her Bio at:
  http://www.bostoncure.org/default.php?nav=bcp&topic=people&bio=StacySchwartz

o Alison Glastein
  Alison is a consultant specializing in grant writing. She's helping
  us get our grant seeking process going.

o Lauren Milne
  Krista Milne, our volunteer staff PR person, gave birth to Lauren
  Milne on June 9th - Lauren is officialy our youngest volunteer!

>>> Cure Map

We continue to forge ahead on our Cure Map formulation. The phase I
document for pathogens is in final review and will soon be posted to
our web site. Hollie has started work on the phase I document for the
nutrition segment of the Cure Map. We are also in the planning stages
to get phase II and phase III of genetics begun.

We've been meeting with our Scientific Advisory Board members - in
particular we met with David Simon and Raj Ratan this past month. In
addition, Art attended at talk on "MS and Genetics" by David Hafler
and Eric Lander, hosted by the National MS Society. You can read Art's
write up at our new MSNews site:
http://msnews.bostoncure.org/article.pl?sid=02/06/02/2235243&mode=nested

>>> Education

The big effort this past month was the launch of our MSNews site. This
addition to our web site provides a place to get daily updates on MS
related news and research updates. Stories can be submitted by
readers in addition to participation in discussions attached to each
story. Check it out at:
http://msnews.bostoncure.org

We really need your help in spreading the word about MSNews, if you
can tell anyone you know with MS about the site we'd appreciate it. In
addition, we have a flyer to hang up at your doctor's office. Please
email a copy to your doctor, ask your friends and co-workers to do the
same: 
http://www.bostoncure.org/pipermail/bcp-volunteer/2002-June/000013.html

The long awaited MS 101 document has a completed first draft. We'll be
reviewing it and posting that to the web site soon.

>>> Community Building

Lot's of meetings and discussions with helpful people: attended the
open house for Peter Lansbury's lab, met Dori Sawyer the executive
director for the Foundation for Neurologic Diseases, had a phone call
with Jeffrey Silverman of the New York NMSS board of directors, talked
to Jamie Heywood of the ALS Therapy Development Foundation, met Minka
vanBeuzkom of the Hereditary Disease Foundation, was introduced to
Wendy Wolfson who is going to pitch a story about us to Red Herring,
talked to Elliot Frohman who is head of UT Southwestern's MS program
and a major patient advocate, and June Kinoshita the executive
director of the Alzheimer's Forum.

Also, thanks to John Copeland of our SAB, I was invited to join the
Institutional Review Board at the Beth Israel. This will be a good
education in reading scientific proposals and understanding the needs
of informed consent documents. Should come in handy as we progress to
phase IV of the Cure Map.

>>> Volunteer Efforts

o Krista Milne did the PR launch for the MSNews site. Our press
  release is available at:
  http://www.bostoncure.org/default.php?nav=news&topic=press-releases

o Robotham Creative has volunteered to create a television public
  service announcement for us. We've got it scripted and now need to
  schedule the filming of it.

o Lisa Sargeant conquered the long-overdue task of getting a list of
  potential volunteer projects ready for posting on the web site:
  http://www.bostoncure.org/default.php?nav=involved&topic=voltasks

o Anne Reed & George Peabody have been helping craft our message for a
  one pager.

o Allitia DiBernardo, as mentioned above, has completed the first
  draft of the MS 101 document.

o Tim Brunelle of Arnold Worldwide provided me with several hours of
  advice regarding the possible role of advertising for a nonprofit
  like the Boston Cure Project.

o Chad Tempest, Deb Brown, and Theresa Hahn continue to help on the
  web site update project.

o Mark Dombeck is continuing efforts to get an XML-to-RDB citation
  database going for us for our phase II efforts.

o Brian Del Vecchio and Matt Wise did the technical work for the
  launch of the MSNews site. In addition Cher Koor, Julie Blumenthal,
  Margaret Doris, Tom Blackadar, Mark Dombeck, Robin Dolan and Nasir
  Rana helped provide initial content.

o David Baker has been helping to get our site linked to by other
  sites with help from Rachel Golub.

>>> Events

We had our second volunteer orientation event.

-- 
...............................................................................
    Art Mellor     : HTTP> http://www.bostoncure.org : Boston Cure Project
art at bostoncure.org :       * Donate Online *         : for Multiple Sclerosis
Cell> 617/899-2360 : Main> 781/788-0880              : Fax> 781/788-8118

	  I don't have a solution but I admire the problem.