[bostoncure.org] Status since last reported on 9/13/04

[Art Mellor]

Boston Cure Project informal status since last reported on 9/13/04:

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

>>> Joining/Leaving Us This Month

o Roenn Roubenoff from Millenium/Tufts University has joined our
  Scientific Advisory Board. He is spearheading a tissue bank project
  there so he has many valuable insights for us. Bio here:
  http://www.bostoncure.org/about/people.php?section=5&id=66

>>> Cure Map

o Subjects are being recruited at both sites for the tissue bank!
  We've also started designing the follow-on study.

o Art and Hollie went to Vienna, Austria for the 20th annual meeting
  of ECTRIMS, the European Committee for Treatment and Research in MS.
  They met with several MS scientists and physicians and attended
  sessions to find out about the latest work in the field.  Read their
  write-up of the meeting here:
  http://msnews.bostoncure.org/article.pl?sid=04/10/18/1142223&mode=nocomment

o We're exploring the idea of holding a scientific workshop next
  spring to discuss strategies for making the best possible use of our
  blood, tissue, and data bank.  Volunteer Lesley Watts who has
  extensive experience in setting up these meetings has graciously
  offered to help.

o Hollie recently interviewed Dr. Daniel Pelletier of UCSF, who is
  working with new imaging techniques to further our understanding of
  MS and improve clinical care for people with MS.  The interview will
  be posted on MSNews and the Boston Cure website shortly.

o We are revising our NIH grant application for tissue bank funding
  that we submitted last year and that was returned with comments.
  Hopefully the second time will be the charm!

o Our volunteer Susan Jones has started helping us track down the
  details of recent MS genetic studies so that we can keep our
  genetics spreadsheet up to date.

>>> Fundraising

o Melissa attended a public relations seminar at the Boston Globe at
  which editors from several local publications (including the Globe
  and the BBJ) coached nonprofit attendees on how to get press
  coverage for their work.

o Art and Melissa met with Bill Hecht, CEO Emeritus of the Alumni
  Association at MIT, for fundraising advice and guidance.

o Melissa attended an Associated Grant Makers meeting which featured
  local foundations that support disability related charities,
  including the Boston Foundation, the Carl and Ruth Shapiro Family
  Foundation,

>>> Education

o A group of volunteers are reviewing books on MS which we will post
  to our web site and announce when they are complete.

o Margaret Doris sent me a long list of great web resources on subject
  rights for clinical trials. Check out the 'Information Relating to
  Participation in Clinical Trials' section here:
  http://www.bostoncure.org/msresources/other.php

o Volunteer Jen Tobin continues working on a paper on neuro-anatomy to
  explain what all those things like oligodendrocytes are that you
  keep reading about.

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:
  - Art and Melissa met with Tina Grogan and Ken Flaherty of Serono & Pfizer
  - We met with Luke Jacobs and Geoff Klass of the Jacobs Neurological
    Institute in Buffalo
  - We hosted the second social entrepreneur's dinner to exchange
    ideas with other area nonprofits
  - Art met with SAB member Vince Macaluso when he was in Boston
  - Art and Hollie met with SAB member Peter Riskind in Vienna
  - Art had several phone calls with Scott Johnson of the Myelin
    Repair Foundation

o Art presented at Babson College on Boston Cure Project and his past
  entrepreneurial ventures again

o The next newsletter is in production and should be going out in the
  coming weeks

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 Boston Cure Project Labyrinth Walk, organized by Jill Mackavey
  and Lisa Desautels, took place on Saturday, September 18 and raised
  over $2200.  Pictures are here:
  http://www.bostoncure.org/events/eventpages/20040918_labyrinth.php#Start

o Boston Cure Project had a table at Teva's September 19th patient marketing 
  seminar in Newton featuring race car driver, Kelly  "Girl" Sutton.

o Join us for "Sing to Cure MS" a very special classical music concert
  featuring Halloween-themed songs and arias as performed by some of
  Boston's finest singers THIS SUNDAY evening, 10/24, at the Pickman
  Recital Hall of the Longy School of Music just outside of Harvard
  Square in Cambridge.  To purchase admission, please contact Ruth
  Seidman at rkseidman at comcast.net or 617-734-7820.
  http://www.bostoncure.org/events/eventpages/20041024_sing_to_cure.php

o The "Cuts to Cure MS" Cut-a-thon is set to take place 11/7/04 at
  About Face Hair Design in Norfolk, VA and we are seeking additional
  hair salons to participate.  Please contact Janelle Hamilton or
  Sarah Conklin for further details about how to participate,
  757-624-3500.

o Our 4th Annual Boston Cure Party is happening Saturday evening,
  11/20, at the MIT Faculty Club in Cambridge.  This year our event
  features Dr.  Kristin Ardlie, Vice President, Genetic Research of
  Genomics Collaborative Inc. as well as Bradley Whitford* of NBC's
  "The West Wing."  Join us for this elegant and informative evening
  out.  RSVP by calling us at 781-487-0008 or going to
  http://www.bostoncure.org/rsvp full details here:
  http://www.bostoncure.org/events/eventpages/20041120_bcp_party.php

  *Barring unforseen production schedule conflicts

o The "Cruise to Cure MS" has been postponed due to hurricaine damage
  at the destination and point of origination.

>>> Operations

o Dave Kaffine continues to improve the donor tracking database he has
  created for us

o We have begun receiving accounting lessons from volunteer Jill
  McGaffigan to increase efficiency.

o We miss volunteer Administrative Assistant Sue Mellor who is
  temporarily out of the office.

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

September Volunteers

*2004 Cuts for a Cure:
Sarah Conklin
Janelle Hamilton

*Accounting Advice:
Jill McGaffigan

*Administrative Assistant:
Sue Mellor

*BCP Concert:
Marion Carroll
Lisa Desautels
Amanda Song
Rebecca Enright
Ruth Seidman

*Boston Cure Party:
Debbie Mellor

*Cruise to Cure MS
Irene Simas

*Donor Database:
Dave Kaffine

*Fundraising
Ray Desautels
Melanie Erickson
Bill Hecht

*Genome Spreadsheet Project
Susan Jones

*Labyrinth
Lisa Desautels
Ray Desautels
Jill Mackavey

*MSNews
Brian Del Vecchio

*Neuroanatomy Paper
Jennifer Tobin

*PR
Deborah Kearney

================================================================
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