[bostoncure.org] Status since 12/16/03

[Art Mellor]

Boston Cure Project informal status since last reported on 12/16/03:

Happy New Year, hope everyone had a great December!

>>> Joining Us This Month

o An MIT student, Anupama Bhimavarapu, is helping us out during
  the month of January as an intern.  She is working on assignments
  related to the Cure Map, such as updating our genetics
  spreadsheet and getting us started on the Nutrition track.

o Kelly Lawrence is temping for us, helping to get a backlog of data
  entry done. She comes to us from Monument Staffing.

>>> Cure Map

o Art attended the CSBi Symposium on Systems Biology at MIT
  http://csbi.mit.edu/news/symposium04
  People from Systems Biology programs around the country came to
  speak and present their efforts. Systems biology takes a more
  "engineering" approach to the life sciences, trying to view
  biology as a complete system that can be modeled to aid in
  prediction and understanding. We believe this sort of approach will
  be necessary to fully understand MS.

o We started preparing for the install of TripleHop's Matchpoint
  software which will allow us to search a variety of information
  sources more effectively as we do our Cure Map research.

o We continued talking and meeting with MS pharmaceutical companies
  about participating in our MS Modeling Consortium with Entelos, Inc.
  Several of them have expressed significant interest so we are
  hopeful that the consortium will be formed.

o The last two Genetics Phase 2 documents are in their final rewrite
  and should be posted later this week.  Thank you to Jorge Oksenberg
  of UCSF for his comments on these and other phase 2 documents!  Also
  in the genetics area, Hollie is teaming up with Dhelia Williamson of
  the CDC and Allison Ashley-Koch of Duke University to write a review
  of HLA alleles and their effect on MS risk.

o Genomics Collaborative is currently working on the instructions for
  the pilot tissue bank collection project (e.g., instructions on how
  to fill out the questionnaire).

>>> Fundraising

o 2004 fundraising efforts are off to a great start thanks to a very
  generous $75K gift from the Water Cove Charitable Foundation.

o Plans are in place for the Water Cove Lead Gift Matching Program for
  which the foundation has pledged to match up to an additional $75K
  in lead gifts of $1,000 or more now through June 30.

o Our vehicle donation program is off and rolling with three people
  having donated cars in less than a month since the program was
  initiated.  Visit http://www.bostoncure.org/about/vehicle.php for
  further details.

o Work on the January appeal is underway with just over 800 letters 
  anticipated to go out this coming  Friday. We only do 2 direct mail
  appeals per year to keep the junk-mail factor low.

o Lisa Sargeant has signed on to be the 2004 Scavenger Hunt
  coordinator. We'll be sending out emails asking for help in
  organizing the event this year. Date and location to be determined
  but it will most likely be near the end of May or beginning of
  June. 

o Art and Melissa met with Mark Sutton of Just Giving to talk about
  their web-based tool for fundraising through sponsorships.  We are
  considering offering the tool to our Scavenger Hunt team
  participants to increase overall participation and help each team
  raise more money.

o Art and Melissa met with Development Consultant, David Hirschberg, to 
  discuss our ideas for a lead gift program for 2004.

o We are now able to accept vehicle donations:
  http://www.bostoncure.org/about/vehicle.php

>>> Education

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 Some upcoming press possibilities (publication date not known yet):
  - Art was interviewed for the magazine Technology Review
  - Art was interviewed for the magazine Fast Company
  - We began talking to some people working on a program for WGBH
    (public TV) on chronic diseases.

o Our second MIT Sloan School Tiger Team, who we asked to identify
  different growth models and tactics we could apply, gave us their
  final presentation in December.  The results will be very useful to
  us as we think about how to expand our base of support.  Thank you
  to Jeff Kim, Emeka Iffih, and John Capello!

o Hollie and Art met with Ed Hill (alt.mult-sclerosis heavy-weight) to
  hear about a very interesting theory involving epitope spreading as
  a mechanism for explaining MS.

o Art and Melissa met with Jayne Gershkowitz of National Tay-Sachs &
  Allied Diseases to compare notes.

o We had another phone call with Scott Johnson of the Myelin Repair
  Foundation, another start-up MS organization that is doing some really
  cool stuff.

o Packages of literature about Boston Cure Project have gone out to 20
  support group leaders across the country who have agreed to
  distribute information about our organization to their support group
  members and help spread the word about our work.

o Met with Jennifer Frashure and Lalit Jain to discuss potential
  volunteer projects.

>>> Events

o No events were hosted or attended over the holidays

>>> Operations

o Our big push this month is getting our Annual Report pulled
  together. This involves a massive review of the financials, a
  comprehensive combing of the databases, and a series of photo-shoots
  using our highly trained staff and volunteers as models. We're
  shooting for an early March production for this. 

o Dave Kaffine has taken on the project of helping us get our custom
  database up and running, based on work by Dave Baker. It's moving
  along and is already generating useful data.

o We took day off on opening day for Lord of the Rings: Return of the
  King. The entire staff (and spouses) went to see a matinee of the
  awesome finale of this great trilogy.

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