[bostoncure.org] Since last reported on 10/19/04

[Art Mellor]

Boston Cure Project informal status since last reported on 10/19/04:

Information on our other mailing lists is at the bottom of this message.

>>> Joining/Leaving Us This Month

o Bruce Sachs has joined our Board of Directors. His bio is here:
  http://www.bostoncure.org/about/people.php?section=1&id=68

o Judy Abdalla joined our Pharma Advisory Board. Her bio is here:
  http://www.bostoncure.org/about/people.php?section=5&id=67

>>> Cure Map

o Our Phase 1 paper on toxic agents has been reviewed, revised, and
  formatted, and is now posted on our web site.  The Phase 1 paper on
  nutrition will be finished very soon as well.
  http://www.bostoncure.org/downloads/phase1-toxicagents.pdf

o Collection of samples and data for our tissue bank is in full swing
  at UMass Memorial in Worcester and Beth Israel Deaconess in Boston.
  We have already made some corrections to our questionnaires based on
  early experiences at the sites.

o We resubmitted our NIH grant proposal after addressing the comments
  we got last time.

o Hollie continues to work on a collaborative MS genetics paper with
  the CDC and Duke.

o Art continues to try and be involved in all aspects of clinical
  studies by participating in a natural history study at the Brigham,
  reviewing studies by being on the IRB at the Beth Israel, and
  helping run a study at the Boston Cure Project.

>>> Fundraising

o The 2004 Massachusetts Catalogue for Philanthropy, in which Boston
  Cure Project is featured on page 49, has gone to print and is being
  mailed out to over 80,000 households with net incomes of $500K+ at
  this very moment.

>>> Education

o Hollie interviewed imaging scientist Dr. Daniel Pelletier from UCSF
  about new uses of imaging in studying and treating MS; this
  interview is posted on our web site.  Another interview with
  Dr. Brenda Banwell who studies childhood MS is in the works.
  http://www.bostoncure.org/downloads/interview-pelletier.pdf

o Volunteer book reviews are starting to come in. You can see them
  here:
  http://www.bostoncure.org/msresources/library.php#bookreviews

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. 

>>> Community Building

o We had a number of meetings and phone calls:
  - Art has been talking to our advisor Eric Hovde about research at
    the Myeling Project, how to get more human research in MS
    happening, and contacting CEOs of all the biotech and pharma
    companies pointing out that they should be looking at MS as a
    viable market (we've just completed a mailing to them).
  - Art continues to talk to Scott Johnson of the Myelin Repair
    foundation on a regular basis.
  - Art attended a Core Connections meeting at Newton-Wellesley
    Hospital. 
  - Advisor Mike Gonnerman came in to discuss possible structures for
    regional affiliates - something we are beginning to consider.
  - Art and Melissa met with Tanya Africa from Truckee, California and
    Amanda Song (from Waltham) to talk about some possible fundraising
    initiatives and ideas.
  - Art, Hollie and Melissa visited Biogen to meet with Al Sandrock and 
    Deborah Hernandez to review the latest Antegren data, which 
    looks quite promising.
  - Art and Hollie met with representatives from Teva Neuroscience over 
    dinner and recruited Dr. Judith Abdalla to be on our pharmaceutical 
    advisory board.

o Susan Dunn is helping us get a project started with the Junior
  League (for next year). 

o Amy Carrier got us mentioned in Ithaca NY press a couple of times.

o The latest newsletter has been mailed and you should have already
  received it. It's available in PDF here:
  http://www.bostoncure.org/downloads/bcp-update-vol0303.pdf

o Three Harvard Business School students are doing a project with us
  to investigate ways to collaborate more formerly with other MS
  organizations. 

o As usual, a few more T-shirt pictures are available:
  http://www.bostoncure.org/events/tshirt.php

>>> Events

o The Sing to Cure MS Halloween Concert took place on Sunday evening,
  10/24 and was once again a great success, raising more than $3500 in
  proceeds for our work. Thanks to Marion Leeds Carroll! Pictures and
  a list of the many generous performers who participated are
  available at:
  http://www.bostoncure.org/events/eventpages/20041024_sing_to_cure.php#Start

o The Second Annual Cuts to Cure MS salon-a-thon took place on Sunday,
  11/7 in Norfolk, VA and thanks to the generosity of the many who
  participated raised over $6,000 in proceeds and pledges. Thanks to
  Brian and Janelle of About Face Hair Designs.  Pictures are
  available here:
  http://www.bostoncure.org/events/eventpages/20041107_cuts_to_cure.php#Start

o Congratulations to Carol Rose of Groton, CT, our most recent Sense of 
  Purpose participant, for raising over $7,800 for the Boston Cure Project by 
  running in the Mystic Places Marathon on 10/24 and for finishing in 4 hours 
  and 12 minutes!

o Our 4th Annual Boston Cure Party is happening Saturday evening,
  http://www.bostoncure.org/events/eventpages/20041120_bcp_party.php

>>> Operations

o Dave Kaffine continues to improve the donor tracking database he has
  created for us and Joan Coyne is working on an interface.

o We have begun receiving accounting lessons from volunteer Jill
  McGaffigan of Lifting Mind consulting.

o We've revamped the volunteer opportunities on our web site:
  http://www.bostoncure.org/about/volunteer.php

o We've booked a booth for the American Academy of Neurology meeting
  in April - our first such presence!

>>> Volunteer Efforts that have been reported since last time

October Volunteers

2004 Cuts for a Cure:
Sarah Conklin
Janelle Hamilton

Accounting Advice:
Jill McGaffigan

Administrative Assistant:
Sue Mellor

BCP Concert:
Marion Leeds Carroll
Lisa Desautels
Amanda Song
Rebecca Enright
Ruth Seidman
Amanda Viciana
Anastasia Robinson
Anthony O'Shea
Beth Canterbury
Dan Pettit
Dana Schnitzer
Daniel Kamalic
Dave Goldhirsch
Debbie Mellor
Denise Ambruson
Devin Dukes
Eric Schwartz
Eric Sosman
Evan Denmark
Ezra Peisach
Gary Thies
Isabel Leonard
James Carroll
Janine Wanee
Jim Carroll
Ken Viciana
Krista Wilhelmsen
Laura Green
Laurie Lemley
Maryann Mootos
Meredith Hansen Skinner
Michelle Wright
Peter Schmidt
Pirjo Heels
Rachel Golub
Randi Kestin
Rebecca Burstein
Rich Hagopian
Skyler Wrench
Stephanie Mann
Steven Morris
Sue Halliday
Susan Cooke
The Brookside Chorale
Mike Green
Thomas Dawkins
Thomas Weber
Todd Hall

Book Reviews:
Lisa Desautels
Marsha Zabarsky

Boston Cure Party:
Debbie Mellor
Rachel Golub
Lisa Desautels
Jane Shapiro
Jill McGaffigan

Donor Database:
Joan Coyne
Dave Kaffine

Fitsense Sense of Purpose:
Carol Rose

Fundraising:
Jane Shapiro
Laura Green
Ray Desautels
Tanya Africa

Genome Spreadsheet Project:
Susan Jones

HBS MS Collaboration Project:
Cara Critzer
Elise Vincens
Robert Hester

MSNews:
Brian Del Vecchio

Newsletter:
Lisa Desautels
Amanda Song
Marie Rudzinsky
Patrice Connelly

Tissue Bank Workshop:
Lesley Watts

Contributed Goods and Services:
Clockwork Design Group, Inc.
Fairmont Copley Plaza
Lifting Mind, Inc.
Mail Perfect, Inc.

================================================================
Remember, you can also receive our other mailings
Sign up at http://www.bostoncure.org/about/joinemail.php
 - bcp-announce: for important announcements as they happen
 - bcp-volunteer: periodic announcements for volunteer opportunities
 - Quarterly print newsletter