[bostoncure.org] Status Since 8/19/03

[Art Mellor]

Boston Cure Project informal status since last reported on 8/19/03:

>>> Joining Us This Month

We regret to announce that our Development Manager, Melissa Baker, is
no longer with us but...

We are happy to announce that the newly wedded Melissa O'Shea has
taken her place! (Same person, different name, if you didn't catch
that :-)

Melissa and her husband Anthony had their wedding this past month in
Tralee, Ireland. Art, Hollie, (and of course Melissa) were all present
and so this month is a bit lighter on status than others due to our
summer vacations.

>>> Cure Map

o Our Study Protocol, Informed Consent Form, and questionnaire are now
  all in their final (for the pilot) forms. The questionaire is being
  formatted into machine readable form this week. Once it is available
  we'll submit it to the Institutional Review Board at the BI. If it
  is accepted we can negotiate a contract with the hospital and begin
  drawing blood!

o We met with Towia Liberman, director of the Beth Israel Deaconess
  Genomics Center, and enlisted him to conduct microarray analyses of our
  samples. He will also participate in a grant proposal we are
  preparing for the NIH to fund part of the tissue bank.

o Art and Hollie took a tour of the Whitehead Institute genotyping
  facility (courtesy of Julia Chang).

o Our intern Stephanie continues to make progress on analyzing and
  categorizing the current MS research projects funded by the NIH and
  NMSS (the bulk of publicly funded MS research) and for comparison,
  the UK MS Society. We will use this information to get a better
  sense of where work is currently being done.

>>> Fundraising

o We held the first Anna Peabody Fund Raffle. Pictures and results are
  available here:
  http://www.bostoncure.org/events/eventpages/20030820_apf_raffle.php

o Mark Halliday is helping us create a video/DVD that will capture our
  solicitation pitch so we can distribute it to non-local areas.

o Teva Neuroscience has agreed to be a gold sponsor for our November event.

o Upcoming Fundraising Events are listed below in the Events section

>>> Education

o We'll be holding an educational Seminar in September to go over the
  results of our Phase 1 and Phase 2 genetics work. Details here:
  http://www.bostoncure.org/events/eventpages/20030920_geneticsphase2.php

o And while not strictuly educational, it's on our web site - we have
  new pictures of people wearing Boston Cure Project t-shirts at:
  http://www.bostoncure.org/events/tshirt.php
  (including one of Melissa and Anthony right after their wedding ceremony)

o MSNews (http://msnews.bostoncure.org) continues to run daily updates
  on MS related items. If you come across anything MS related and new
  on the web, please submit it to our site. There is now a link to
  MSNews on our main menu at our web site.

>>> Community Building

o We had a meeting with Biogen regarding ways to work together and met
  some of their new hires

o Art and Hollie attended that BioTechnology Celebration held at MIT
  and was attended by many researchers and pharma people

o Art attended and Krista participated in a class given by SAB member
  Al Sandrock at the Harvard Medical School on diagnosing MS.

o Art attended an excellent talk from SAB member Elliot Frohman,
  sponsored by Biogen at the Quincy, MA Marriott

o Had a good talk about what we are doing with Reynold Spector, the
  former VP of research at Merck regarding our approach and ways to
  approach the Pharma industry

o Art, Hollie, and Debbie staffed a table at a Teva event at Foxwoods
  and met many attendees who were interested in our efforts

o George Peabody's "Families with MS" project is moving along, you
  can now read about it on the web at:
  http://www.familieswithms.org
  Thanks to Chad Tempest of Clockwork Design Group for the graphic and
  web design

o You can see some of our recent press here
  http://www.bostoncure.org/news/bcp.php

>>> Events

o 3rd Annual Boston Cure Party
  We've signed up our lecturers for the November gala -
  *Dr. Fischbach, Dean of Columbia Medical School and former director
  of the NIH/NINDS which is the section that conducts and funds the
  majority of MS research in the country.
  *Dr. Racke will also present on the topic of MS immunology
  You can find details and RSVP here:
  http://www.bostoncure.org/events/eventpages/20031122_bcp_party.php

o Come meet us and others at our second "MS Social" on Oct 6 in
  Waltham. Details at:
  http://www.bostoncure.org/events/eventpages/20031006_mssocial.php

o "Sing to Cure MS: The Boston Cure Project Halloween Concert" will
  take place on Sunday, October 26 at the Pleasant Street
  Congregational Church in Arlington from 3 - 5pm.  Tickets are
  available at a reduced cost when purchased in advance.  Contact
  Randi Kestin at 508/226-7760 or cupid at mit.edu to reserve your seat
  today!  For more details see
  http://www.bostoncure.org/events/eventpages/20031026_sing_to_cure.php

o Our golf tournament, "Tee off to Cure MS," takes place on October 8
  at the award-winning Pine Hills Golf Club in Plymouth.  Cost to play
  is $300 per person/$1200 per foursome.  Sign up now by contacting
  Hank Tuohy at 508-477-5355.  For more details see
  http://www.bostoncure.org/events/eventpages/20031008_golftourney.php

o The "Sense of Purpose" Program runners is still going on.  If you're
  a runner or an athlete competing in race and you are interested in
  earning free Fitsense wireless training devices, visit
  http://www.bostoncure.org/senseofpurpose for more details.  You can
  raise funds for the Boston Cure Project by enrolling in the program
  and getting your friends and family to sponsor your participation in
  your race or athletic event.

>>> Volunteer Efforts not mentioned elsewhere that have been reported
    since last time

VOLUNTEER STAFF
Debbie Mellor - Contributor Acquisition
Susan Mellor - Administrative Assistant
Stephanie Sisto - Intern

ADMIN
Brian Mellor
Sue Mellor

APF RAFFLE
Bill Babcock
Tom Blackadar
Steve Bowler
Herb Connolly Acura, Framingham
David Dines
Keff Dolan
Rob Donaldson
Brian Doniger
Rob Drake
Tracey Estabrook
Glen Glater
Jill Graynor
Janelle Hamilton
Maggie Harling
Adam Hayes
Lew Hollerbach
David Isenberg
Rosalind Joffe
Arthur and Phyllis Kaplan
Laura Kesser
Paul Lynch
Kim Lytle
Harvey Mades
Ruth Mades
Jill McGaffigan
Brian Mellor
Debbie Mellor (also Teva event)
Sue Mellor
Krista Milne
Joanne Minassian
Julia Montgomery
Charlie Namias
The Peabody-Kaplan Family
Lorraine Peabody
Greg Pelosi
Jill Renwick
Stephanie Sisto
Ru Sweeney
Mark Tavitian
Amanda Viciana
H. Daniel Way

DIAGNOSIS BROCHURE
Dr. Lisa Paine

FITSENSE SENSE OF PURPOSE PROGRAM
Tom Blackadar/Fitsense
Billy Harless
Father Bernard Marton

NEWSLETTER
Shari Agatstein
Anne Marie Armstrong
Savannah Bashaw
Maryann Boyle Murray
Bob Brown
Jeannie Connerney
Mike Ervolini
Nikki Lessin-Joseph
Krista Milne
Stephanie Sisto
Frank Siteman
Hillary Stanton
Debby Wiesen

OTHER
Mark Halliday (Solicitation Video)
Janelle Hamilton (Cuts for a Cure)
Rosalind Joffe (State by state membership drive)
Randi Kestin (Sing to Cure MS)
Marion Leeds Carroll (Sing to Cure MS)
Krista Milne (PR)
Sujit Purkayastha (Cure Map & India group set-up)
Lisa Sargeant (Scavenger Hunt)
Leora Schiff (MS & Genetics Seminar)
Stephanie Sisto (NMSS Research Spending Analysis & MS Social)
Freda Warrington (Advisor)
Kevin Wood (Entelos Project)

COMPANIES CONTRIBUTING GOODS OR SERVICES:
Clockwork Design Group, Inc. (design)
Echo Engineering (database construction)
Mail Perfect, Inc. (mailing services)