[bostoncure.org] Status Since 9/16/03

[Art Mellor]

Boston Cure Project informal status since last reported on 9/16/03:

>>> Joining Us This Month

We had no changes in personnel this past month.

>>> Cure Map

o Hollie prepared and submitted our first NIH grant application in
  collaboration with Tim Vartanian and Towia Libermann, requesting funding
  for MS gene discovery activities using our multidisciplinary blood &
  tissue bank 

o We submitted our protocol for the pilot blood collection study to
  the Beth Israel Institutional Review Board for approval. Due to the
  minimal risk of this trial, we submitted for expedited review, but
  the possible genetics component may cause them to ask us to resubmit
  for full review. But it's done and being looked at. We will post
  final copies of all our study documents on our web site once they
  have been approved.

o We entered into a partnership with Entelos, Inc. of Foster City, CA to
  promote the development of an "in silico" (computer) model of MS to
  accelerate the pace of research and pharmaceutical development in this
  field

o Art attended a lecture at MIT on the new CISB (csbi.mit.edu) program
  fusing Biology and other disciplines to solve complex biological
  problems. 

o Hollie and Art attended the MIT Scripts for Live Symposium at MIT

o Belinda Vandervoort has taken on a project to help compile a list of
  all the pharmaceutical companies working on MS drug targets that we
  can post on our web site and track the progress of over time.

o We had discussions with Dr. Alan Bowling at the Rocky Mountain MS
  Center about working together to recruit for their MS brain
  bank. More on this in a few months.

o Our intern Stephanie has been working on organizing the data for the
  NMSS and the NIH research dollars project as well as working on
  communicating and getting the correct data from the UK MS Society.

>>> Fundraising

o Upcoming Fundraising Events are listed below in the Events section

o We continue to work with Blue Sky Collaborative to develop a formal
  "Friends and Families" fundraising program

o Our Tee-Off to Cure MS Golf Tournament took place last Wednesday at
  Pine Hills Golf Club in Plymouth, Massachusetts.  The combination of
  beautiful fall weather and a fantastic course made for a very
  enjoyable day. Special thanks to Robertson's GMC Truck of Wareham who
  offered a free GMC Envoy to anyone hitting a hole in one, to Old
  Colony Sports for an excellent job running the event on our behalf,
  and to all those who attended.  We're looking forward to doing it
  again next year. Pictures available:
  http://www.bostoncure.org/events/eventpages/20031008_golftourney.php

o Melissa and Art attended a fundraising seminar at Hemenway & Barnes

o We met with Liz Novack about event planning for next year

o Father Bernard Marton of Irving, TX has raised more than $10,000 for
  the Boston Cure Project through his participation in the LaSalle
  Chicago Marathon which took place just this past Sunday.  Hats off
  to him for his finishing time of 4 hours, 51 minutes and to all
  those who generously supported him to raise money for our research.
  Look for details about Father Bernard in our next newsletter

>>> Education

o Art & Hollie gave an in-depth seminar on the genetics of MS, based on
  the results of our Cure Map analysis. Slides from the class are
  available at our web site:
  http://www.bostoncure.org/events/eventpages/20030920_geneticsphase2.php

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 A few more T-shirt pictures are available:
  http://www.bostoncure.org/events/tshirt.php

o We had discussions with a number of people:
  - Prof. Fiona Murry of MIT's Sloan school regarding mapping
    knowledge in the healthcare field
  - Diana Wemore of the Cystic Fibrosis Foundation Therapeutics who are
    taking a novel approach to funding drug targets via a nonprofit
  - Katie from the NUGene project at Northwestern about blood
    collections
  - Cheryl McCourtie of the Montel Williams MS Foundation
  - Fred Fox, Lyndi Hirsch and Lissa Watson of Serono
  - Melissa and Art met with Eve Nichols at the Fidelity Foundation

o We launched another MIT Sloan school "Tiger Team" project to
  investigate strategies for geographic expansion of the Boston Cure
  Project. 

o We've prepared another issue of the Newsletter, which should go out
  in a couple of weeks.

o Art attended a presentation by Rip Kinkel, for Biogen at the
  Cambridge Marriott

o We had our second MS Social that had its attendance suffer a bit
  from being on Yom Kippur and in the midst of the Red Sox final run
  for the penant.

o George Peabody hosted the first Families with MS get together in
  Acton.

>>> Events

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 3rd Annual Boston Cure Party - *RSVP* Required
  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

>>> 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
Sue Mellor

BOSTON CURE PARTY
Debbie Mellor
Liz Novack
Stephanie Forrand

NEWLY DIAGNOSED BROCHURE
Dr. Lisa Paine

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

NEWSLETTER
Shari Agatstein
Savannah Bashaw
Marcie Lascher
Sue Mellor
Krista Milne
Nikki Rivera

SING TO CURE MS
Nancy Burstein
Marion Leeds Carroll
Randi Kestin
David Schreiber

SLOAN TIGER TEAM
John Capello
Emeka B. Iffih
Jeff Kim

OTHER
Keith Bregman & Lauren Blankstein (wedding favors)
Nancy Costello (halloween party)
Mark Halliday (Solicitation Video)
Chris Harding (PSA Contacts)
Bill Herron (Database Transfer Project)
Rosalind Joffe (State by state membership drive)
Karla Nelson (halloween party)
Krista Milne (PR)
Sujit Purkayastha (Cure Map & India group set-up)
Stephanie Sisto (NMSS Research Spending Analysis & MS Social)
Belinda Vandervoort (Drug Treatments for MS Mapping)
Freda Warrington (Personal Appeal)
Kevin Wood (Entelos Project)

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