[bostoncure.org] informal status since last reported on 5/18/04

[Art Mellor]

Boston Cure Project informal status since last reported on 5/18/04:

>>> Joining/Leaving Us This Month

We've had quite a bit of action in the personnel area in the past
month or so. As previously mentioned we added a number of people to
our Scientific Advisory Boards and their bios are trickling in:

o Amit Bar-Or
  http://www.bostoncure.org/about/people.php?section=4&id=60
o Larry Steinman
  http://www.bostoncure.org/about/people.php?section=4&id=62
o Peter Calabresi
  http://www.bostoncure.org/about/people.php?section=4&id=61

We also have 2 MIT interns for the summer: Irene Rahmin and Brian
Keegan. You'll read a bit more about them below.

And we've lost 2 Pharmaceutical Advisory Board members due to changing
companies. Ayad Abdul-Ahad from Berlex has moved to Biogen Idec and
Gordon Francis (as quickly as he came, he went) has accepted a
position at Elan. While we'd love to keep them on as advisors, we try
to maintain a balanced Pharmaceutical Advisory Board and not be too
heavily represented by a single company (and Elan is working with
Biogen). 

>>> Cure Map

o The Tissue Bank is making progress. The wheels of hospital
  beauracracy move slowly, but we finally have budgets for both the
  Beth Israel and UMass sites and a draft agreement from UMass. We're
  awaiting an agreement from Beth Israel which should be here by early
  next week. Next step: sign agreements, pay them money, start
  recruiting. 

o The company we have contracted with to deal with the processing,
  storage, and distribution of the samples we collect, Genomics
  Collaborative Inc., has been acquired by SeraCare. They are keeping
  their own identity for now, but this should give us a broader range
  of services available.

o Our two MIT summer interns (Irene Rahman and Brian Keegan) are now
  on board and are working on the Phase 1 Cure Map documents in the
  areas of toxic agents and nutrition.

o Hollie is fully engaged on our Phase 2 assessment of infectious
  agent research in MS.  She is currently analyzing studies performed
  on the approximately 50 viruses investigated to date in MS.

o Art, Melissa and Hollie attended an informative presentation given
  by our SAB member Vincent Macaluso, who spoke from his experiences
  as both an MS patient and neurologist.

o Stephanie Sisto, our long-term intern, is putting the final touches
  on her analysis of what types of research in MS the money goes to.
  We'll put that on our web site when it is ready.

>>> Fundraising

o We are very pleased to announce that met the Water Cove Charitable
  Foundation's Lead Gift Matching Challenge, having generated more
  than $75,000 in gifts of $1,000 or more since January 1 and prior to
  our deadline of July 1.

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 It's the perfect opportunity for those of you
  who have been looking for a way to help out, but aren't in the
  Boston area - help us get a presence in YOUR area!

>>> Education

o We have sent the final comments on our booklet for people newly
  diagnosed with MS to our graphic designer, Clockwork Design Group
  Inc.  The on-line version will be posted on our web site soon --
  stay tuned!

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

o Jennifer Frashure continues to help us spec out a Newsletter for
  Neurologists (and other interested parties) that summarizes recent
  research results.

o Art tested a prototype knowledge update web site that MIT is hoping
  to put out to provide access to cutting edge research presentations
  and information coming out of the school.

o Brian Del Vecchio is helping us with an upgrade of the MSNews
  server. This will take a while but will result in fixing a number of
  bugs we are struggling with.

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 Press Mentions
  - Washington Post
    http://www.bostoncure.org/news/bcp/20040601-washingtonpost.php
  - eContent Magazine
    http://www.bostoncure.org/news/bcp/20040604-econtent.php

o We had lots of meetings and phone calls with people
  - Melissa met with development consultant, David Hirschberg, for fundraising 
    guidance and assistance.
  - Art spoke to the Young Women with MS group on May 27 at the Boston Cure 
    Project's new offices.
  - Art and Rob Lester have been working on finding out more about LDN
    by talking to various Neurologists who are prescribing it.
  - Art met with Richard Cole, an ex-VP in development at the NMSS
  - Talked to Joan Zietlow about Pharmacy Benefit Managers and how we
    might work with them
  - Touching base with Jamie Heywood at the ALSTDF.org and Scott
    Johnson of the Myelin Repair foundation - both of whom help us out
    with tips and tricks of the trade. Also talked to Augusto Odone at
    the Myelin Project.
  - Melissa & Art met with representatives from Biogen and Serono to
    discuss ways of working together
  - Gabe d'Annunzio has been helping out with some strategic marketing
    mentoring
  - We met with representatives of Olin College to see how we might
    play a role in their social enterprise efforts
  - Introductions were made to the New England Complex Systems
    Institute which is looking at biological and health care system
    modelling.
  - We've been talking to Rita Glaze and her publicist about helping
    spread the word on her book about people with MS.

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

>>> Events

o The "Hunt to Cure MS" Scavenger Hunt was again an overwhelming
  success, taking place on May 22 and raising more than $30,000 in
  gifts for the organization. You can see pictures and videos here:
  http://www.bostoncure.org/events/eventpages/20040522_hunt04.php

o Spaces are still available in the 2nd annual "Tee off to Cure MS"
  Golf Tournament taking place at Charter Oak Country Club on Monday,
  July 12 and more information can be found about this here:
  http://www.bostoncure.org/events/eventpages/20040712_golftourney.php

o Our 3rd MS Social has been scheduled! It's June 6th at 6pm at "News"
  in downton Boston. Details are here:
  http://www.bostoncure.org/events/eventpages/20040610_mssocial.php

o We had our third successful and enjoyable MS Social last week at
  "News" in downtown Boston thanks to Rosalind Joffe, who assisted in
  organizing the event, and to Gail Martino, who not only helped
  organize it but donated the party so that we could enjoy the venue
  and free food!

o Mark your calendars for the 2nd annual "Sing to Cure MS" classical
  music concert taking place on Sunday, October 24 from 7 to 9pm at
  the Pickman Recital Hall, Longy School of Music in Harvard Square.

o Mark your calendars for the 4th annual Boston Cure Party which is
  scheduled to take place at the MIT Faculty Club in Cambridge on
  Saturday, November 20 and will feature Art Mellor and Dr. Tim
  Vartanian speaking in person about all that we have been up to.
  A special celebrity speaker is in the works!

>>> Operations

o We've been having network and phone problems since we moved
  in. These have all been Verizon related - they are working on them,
  but doing so rather slowly. If you've experienced problems reaching
  our web site or MSNews, this is probably why. Please hang in there,
  it should be fixed in the next few weeks.

o Joan Coyne & Dave Kaffine continue to make progress on developing
  a new database for tracking our contributions and supporter lists.
  We can read in all our existing data and run reports on it at this
  point.

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

May Volunteers

* 2004 Cuts for a Cure:
Janelle Hamilton

* Administrative Assistant:
Sue Mellor

* Marketing/PR/Fundraising Advice:
Gabe D'Anunzio
David Hirschberg
Bill Ray

* Analysis of research spending dollars for MS organizations:
Stephanie Sisto

* BCP Concert:
Marion Carroll

* Donor Database Project:
David Kaffine
Joan Coyne

* Golf 2004:
Deborah Kearney
Jacqui McCoy
Mark Aher

* Labyrinth:
Lisa Desautels
Jill Tagliaferri

* LDN Project:
Robert Lester

* Administrative Work:
Evin Luongo

* MS Social:
Rosalind Joffe
Gail Martino

* Neurology Newsletter:
Jennifer Frashure

* Scavenger Hunt 2004:
Lisa Sargeant
Alicia Penny
Alyssa Mades
Amanda Song
Andy Brown
Belinda Vandervoort
Brad Parker
Bryan Gildenberg
Chuck Potier
Cindy McLaughlin
Daniel Mades
David Mades
David Olson
Debbie Mellor
Elizabeth Dean-Clower, M.D.
Ellie Mirman
Erik Abel
Fiona Reardon
Frank Sisto
Joan Coyne
Julie Baker
Karen Freeman
Karen Mades
Kathleen Chanliau
Katy Hill
Kellie Trainor
Kevin Song
Kimberly Labow
Lori Tsuruda
Mark Minassian
Michael Pomarole
Michelle Lovely
Nancy Gildenberg
Patrick McLaughlin
Rachel Elias 
Rekha Koshy
Sabrina Sequiera
Shannon Sardelli
Sue Mellor
Susan Rowe
Suzie Truglia



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