[bostoncure.org] Status since 3/23/04

[Art Mellor]

Boston Cure Project informal status since last reported on 3/23/04:

>>> Joining/Leaving Us This Month

o Kellie Lawrence, the temp we had filling in for Meghan ended her
  stint after doing an amazing job. She was replaced by:

o Julie Morgenlender is our new permanent Operations Manager. You can
  see her picture and bio here:
  http://www.bostoncure.org/about/people.php?section=2&id=59

o Koby Mok joins our Pharmaceutical Advisory Board representing
  Teva. His bio and picture is here:
  http://www.bostoncure.org/about/people.php?section=5&id=58

>>> Cure Map

o On the Cure Map, Hollie completed a general scan of the MS research
  literature on possible involvement of infectious agents, and will
  now begin focusing on specific topics.  We are also actively looking
  for summer college interns to help us make progress on Phase 1 of
  the nutrition, toxic agents and/or trauma tracks.

o Art and Hollie attended the BioITWorld conference in Boston and
  learned about a few new interesting technologies that we might be able
  to use in our work.

o Hollie continues to collaborate with Dee Williamson of the CDC and
  Allison Ashley-Koch of Duke University on a review of the HLA-DR2
  haplotype in MS.  

o Art and Hollie are off to the American Academy of Neurology meeting
  in San Francisco next week. Lot's to report when we return.

o Art has been fielding an increasing number of queries (and thus
  looking in to) LDN & Aimspro/Caprivax/Goat Serum. You can follow the
  threads of discussion at http://msnews.bostoncure.org

>>> Fundraising

o Art and Melissa met with George Potts of NY Life to learn a little
  bit about how planned giving works.

o Boston Cure Project has launched its Expansion Team program through which 
  Boston Cure Project supporters may create family or regional funds (in the 
  name of a specific person, family or region) to benefit the Boston Cure 
  Project.  Contact Melissa O'Shea for more details: 781-788-0227

o This Saturday at 9am the Boston Volleyball Association is hosting a 
  tournament at the Jackson-Mann Community Center, 40 Armington St., Allston, 
  MA  02134 to raise money and awareness for the Boston Cure Project and the 
  National Multiple Sclerosis Society.

o Thank you to Bruce Sachs, Freda Warrington, and Lisa Desautels whose
  personal letter writing campaigns have already raised close to
  $8,000 for our organization.

>>> Education

o Intern Stephanie Sisto has finished compiling data on research
  spending by the NIH, NMSS, and UK MS Society. She is now beginning
  the analysis of that data.

o Volunteer Jennifer Frashure continues to work with us to develop a
  research-oriented MS newsletter aimed at neurologists and other
  healthcare professionals

o We have entered into an agreement with the folks at
  www.centerwatch.com to provide some content on our web site
  regarding clinical trials in MS. It is available here:
  http://www.bostoncure.org/msresources/trials.php

o The Study Protocol, Informed Consent, and Questionnaire for the
  Tissue Bank are now available on the web at the bottom of this page:
  http://www.bostoncure.org/curemap/tissuebank.php
  
o As reported last month, our protocol was approved at the Beth Israel
  and we are scheduled to have our first meeting to discuss the budget
  with the BI on Monday. 

o In addition, our protocol has been approved with changes at the
  UMass Medical Center in Dr. Riskind's group. The changes have been
  made and resubmitted and we await full approval.

o We have begun setting up a knowledge management tool from TripleHop
  called Matchpoint. It will provide a specialized search tool for
  searching MS related resources. We'll announce when this is
  available. 

o We finalized the text of our brochure for people newly diagnosed with
  MS; it is now ready for graphic design and production.

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

o Art spoke about running nonprofits at Donna Kelley's Class at Babson

o Meetings with people in the community:
  - Core Connections support group http://www.coreconnections.org
  - Met with Board of Advisors memberMike Ervolini
  - Tim and Art met with Teva folks to get Pharma Adisory Board member
  - Met with supporters Bruce Manning and Matt Wise
  - Gabe d'Annunzio came in to provide some strategic marketing advice
  - Art and Melissa met with Pat Fiaschetti and Rita Glaze to discuss Rita's 
    new book, "LifeLines: Stories From Women with Hope" and how we might work 
    together to promote one another's efforts.

>>> Events

o The second annual "Tee Off to Cure MS" Golf Tournament is promising
  to be a very successful tournament with sponsorships already in
  place from Mellon Bank, Marsh Private Client Services, North Bridge
  Venture Partners, General Dynamics, Paul McCoy Family Office
  Services, and TJX Corporation.  For more information or to sign up:
  http://www.bostoncure.org/events/eventpages/20040712_golftourney.php

o The third annual "Hunt to Cure MS" scavenger hunt is also well
  underway with more than 20 teams already pre-registered and sponsors
  such as CVS, Sun Life Financial, Scott Goffstein & Associates,
  Skelmir, West Suburban Imaging, and Kevin Song Homes of Realty
  Executives already signed up to participate.  To sign up to
  participate or to get more information, visit:
  www.bostoncure.org/hunt

o Art went to hear John Ross, CFO of United Way, at Mike Gonnerman's
  monthly financial gathering.

>>> Operations

o Our 2003 Annual Report is printed. A PDF is available here:
  http://www.bostoncure.org/downloads/bcp-annualreport-2003.pdf
  It been mailed out to individuals giving $250 or more last
  year. Email us to request we send you one (include your mailing
  address).

o Our Winter Newsletter has also been printed and mailed out.
  The PDF is available here:
  http://www.bostoncure.org/downloads/bcp-update-vol0204.pdf
  If you aren't receiving one in the mail and would like to, you can
  sign up to get it here:
  http://www.bostoncure.org/about/joinemail.php

o Volunteer Dave Kaffine has been helping to create a relational
  database for tracking our donors and mailing lists and scripts to
  import to it from our current spreadsheet based system.

o Jill McGaffigan and Sue Mellor helped us get ready for our annual
  Audit. We'll post the results as soon as we have them.

o We're moving to a new location on May 2nd. It's time to get our own
  space so we've signed a lease for an office on Prospect Hill in
  Waltham, just off 128. We'll send out details as soon as we have
  moved. We'll be subletting one of our offices to another small
  nonprofit called Families for Depression Awareness:
  http://www.familyaware.org/

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

March-April Volunteers

Annual Report 2003:
Sue Mellor

Newly Diagnosed Brochure:
Maggie Harling
Lisa Paine
Cynthia King

Analysis of Research Spending Dollars for MS Organizations:
Stephanie Sisto

Preparation for Audit:
Jill McGaffigan
Sue Mellor

Scavenger Hunt 2004:
Kellie Trainor
Debbie Mellor
Joanne Minassian
Sabrina Sequiera
Amanda Song
Lisa Sargeant
Sue Mellor
Belinda Vandervoort

Neuro Newsletter:
Jennifer Frasure

Donor Database Project:
David Kaffine

Neuro Newsletter:
Jennifer Frashure

BCP Concert:
Marion Carroll

Golf 2004:
Jacqui McCoy
Mark Aher

MS Social:
Gail Martino
Susan Morissette

Fundraising:
Gary Magnant
Charlie Namias
Bruce Sachs
Lisa Desautels
Freda Warrington
Deborah Kearney
George Peabody
Nancy Kaplan

2004 Cuts for a Cure:
Janelle Hamilton

Volunteered Service:
Roger Glovsky
Clock Tower Law Group
Clockwork Design Group, Inc.
Mike Yashko
Mike Ripp

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