[bostoncure.org] Status since 10/14/03

[Art Mellor]

Boston Cure Project informal status since last reported on 10/14/03:

>>> Joining Us This Month

We have 2 coming and 2 going:

We'll most likely have 2 new Directors joining us soon, we'll announce
it formally once it's a done deal.

Krista Milne is winding down her formal involvement as our main PR
contact. We'd like to thank her for the tremendous amount of work she
has done for us.

Our Operations Manager, Andii, will be leaving us at the end of the
year. We are in the process of seeking a replacement. If you know
someone who is a "Super Admin", hard-working, intelligent, able and
willing to handle all the administrative details from the mundane to
the complex and wants to work in a small, start-up situation, have
them send a cover letter and resume to info at bostoncure.org. Five years
experience, minimum, of running an office is required.

>>> Cure Map

o Work proceeds on phase 2 of the genetics cure map track, with two new
  papers to be posted shortly and the final two well underway. We hope
  to have phase 2 of genetics completed by the end of the year.

o Working with the disease modeling company Entelos, we have started
  approaching pharmaceutical and biotech companies about joining our
  consortium to build an "in silico" (computer) model of MS.

o Last month we submitted our tissue bank protoccol for expedited
  review at the Beth Israel. This is a quicker version for "low risk"
  protocols, for which we fit the general description. However, as we
  thought might happen, it was deemed necessary to have a full board
  review due to the genetic and database components. We have
  resubmitted for review by the full board which will take place on
  Dec. 1. We will be notified within a few weeks after that of the
  results. 

o Genomics Collaborative is working on the trial "manual" to be used
  by the investigators doing the collection. They are also setting up
  the database to store the data from our questionaire and medical
  records. 

o As a member of one of the IRB's at the Beth Israel, Art attended the
  annual IRB retreat to learn about IRB issues and discuss current
  problem areas. 

o TripleHop has agreed to work with us to set up their Matchpoint
  search software at Boston Cure Project. This is software that will
  allow us to do complex searches across a wide variety of sources all
  through a single interface. This will be very helpful in working on
  the Cure Map.

o Our intern Stephanie has been working on organizing the data for the
  NMSS and the NIH research dollars project as well as working on
  communicating and getting the correct data from the UK MS Society.
  She is in the beginning stages of analysis of this data.

>>> Fundraising

o Upcoming Fundraising Events are listed below in the Events section

o Contribution Cards
  Thanks to Janice Altman who suggested that we create a special
  contribution card for the holidays.  These cards ($25 for a package
  of 10) will allow individuals to make a contribution to the Boston
  Cure Project in memory, in honor, or in name of another person in
  lieu of a holiday gift.  Call Melissa for more details 781-788-0227.

o Tal Viskin is our latest Sense of Purpose participant.  Tal ran the
  Baltimore Marathon for us on October 18 and in just over 2 weeks
  raised more than $800 for us in honor of Anna Peabody of Acton.
  Thanks for your efforts Tal!

o Michael Frech is another Sense of Purpose participant who will be
  running in the Philadelphia Marathon for us on Sunday!  His friends,
  Keith and Lauren Bregman, in support of his efforts opted to donate
  money to the Boston Cure Project in lieu of favors at their wedding
  recently.  Congratulations to Keith and Lauren on their recent
  marriage and best of luck to Michael in the race this weekend!

o Thanks to Karla Nelson and Colin Manchester and also to Nancy
  Costello who hosted Halloween parties last month to raise money for
  the Boston Cure Project.

o Last week, Melissa attended "Fundraising for Small Nonprofits", a
  course offered by The Fund Raising School at the Center on
  Philanthropy at Indiana University.  The course was very helpful and
  offered excellent insight into planning and strategy needs for next
  year's development efforts.

o We continue to work with Blue Sky Collaborative to develop a formal
  "Friends and Families" fundraising program and are nearing a final
  contract. 

o Mark Halliday has been helping us pull together a Solicitation Video
  that can be used to present our case to potential supporters when we
  can't be physically present.

>>> Education

o The committee developing our brochure for people newly diagnosed with
  MS has completed a comprehensive draft of this document.  It is now
  being reviewed by some of our scientific advisors.

o Thersa Hahn has been helping with some Web updates and bug fixes on
  our web site. 

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 We had discussions with a number of people:
  - Kaleil Isaza Tuzman, of the movie Startup.com, saw an article on
    us in FSB and got in touch to learn more
  - Elizabeth Gargill of BBK Healthcare called regarding market
    research on a statin MS trial
  - Mark,Peter, & Carol Rose saw the FSB article and came to visit to
    see how they could help out and to learn more about us
  - We had lunches with our SAB members David Simon and Peter Lansbury
  - Art had a phone call w/May Liang of Epilepsy Cure Project to swap
    stories and ideas
  - Art and Scott Johnson of Myelin Repair Foundation chatted on the
    phone and kept each other up to date
  - We met with Nina Coslov and Gene Williams of Genzyme's MS group
  - Nir Dotan & Avi Dukler of Glycominds came by to discuss
    participating in the tissue bank in some way

o Attended events
  - ALS-TDF reception and new lab tour - they have an impressive setup
  - Challenge Unlimited (Ironstone Farm) dinner to support their
    efforts which include hippotherapy for people with MS
  - NMSS MS Social at Pho Pasteur
  - United Way Board Bank fair
  - Core Connections support group
  - Biogen presentation w/David Victor and Jonathan Katz
  - Art presented Boston Cure Project to Babson Class on entrepreneurship

o We have a new "Tiger Team" of MIT Sloan and engineering students who
  are analyzing nonprofit growth strategies that we may choose to adopt as
  we grow.

o Latest issue of the newsletter is out:
  http://www.bostoncure.org/downloads/bcp-update-vol0203.pdf

>>> Events

o Sing to Cure MS
  You can see pictures from this wonderful event that raised more than
  $6,000 here:
  http://www.bostoncure.org/events/eventpages/20031026_sing_to_cure.php

o 3rd Annual Boston Cure Party - *RSVP* Required
  This Saturday!
  You can find details and RSVP here:
  http://www.bostoncure.org/events/eventpages/20031122_bcp_party.php

>>> Volunteer Efforts not mentioned elsewhere that have been reported
    since last time

VOLUNTEERS for Monthly Status Update

VOLUNTEER STAFF
Debbie Mellor - Contributor Acquisition
Susan Mellor - Administrative Assistant
Stephanie Sisto - Intern

ADMIN
Sue Mellor

ADVISOR
Janice Altman

BOSTON CURE PARTY
Debbie Mellor
Stephanie Forrand
Lisa Sargeant
Nancy Costello
Sue Mellor
Brian Mellor
Sherry Reynolds
Robyn Yearwood
Deb Krieger
Krista Milne
Alicia Penney
Terry Clivilles

BROCHURE FOR THE NEWLY-DIAGNOSED
Dr. Lisa Paine
Dr. Maggie Harling

FITSENSE SENSE OF PURPOSE PROGRAM
Tom Blackadar/Fitsense
Billy Harless
Father Bernard Marton
Mike Frech
David Agatstein
Tal Viskin

NEWSLETTER
Michael Racke

SING TO CURE MS
Nancy Burstein
James Carroll
Marion Leeds Carroll
John Copeland
Rachel Elias
Randi Kestin
Judi Lemoine
Isabel Leonard
Debbie Mellor
Sue Mellor
Krista Milne
Charlie Namias
Anthony O'Shea
Ezra Peisach
Dick Ronan
Helen Schmidt
Katie Schmidt
David and Ruth Schreiber
Elizabeth Tustian
Debby Wiesen
Rich Wenger
Sarah Wenzel

SING TO CURE MS  MUSICIANS & PERFORMERS
Liana Bishop
Beth Canterbury
Michelle Coolidge
David Goldhirsch
Kristien Creamer
Brendan Daly
Thomas Dawkins
Katherine Engel Meifert
Felicity Graham
Laura Green
Mike Green and the Brookside Elementary Chorale
Eugenia Hamilton-Duke
Catherine Hedberg
Dan Kamalic
Emily Laurel Boone
David Leigh
Thea Lobo
Linda Nadeau
Sarah Ryman
Peter Schmidt
Eric Schwartz
Janine Wanee
Tom Weber
Wendy Weiler
Sarah Whitten
Graham Wright
Michelle Wright

SLOAN TIGER TEAM
John Capello
Emeka B. Iffih
Jeff Kim

TEE-OFF TO CURE MS
Jim Delgaizo
Kip Diggs
Krista Milne
Ed Raws
Dave Ray
Tom Stephens
Bobby Trieger
Peter Vass
Wilbur Wood

OTHER
Jay & Judy Batson ("club night" fundraiser & bike-a-thon)
Keith Bregman & Lauren Blankstein (wedding favors)
Nancy Costello (halloween party)
Theresa Hahn (Web Site)
Mark Halliday (Solicitation Video)
Bill Herron (Database Transfer Project)
Karla Nelson & Colin Manchester (halloween party)
Krista Milne (PR)
Charlie Namias (administrative)
Sujit Purkayastha (Cure Map & India group set-up)
Anne Reed (Marketing)
Stephanie Sisto (NMSS Research Spending Analysis & MS Social)
Belinda Vandervoort (Drug Treatments for MS Mapping)
Freda Warrington (Personal Appeal)
Pam Wolf (Recruitment)
Kevin Wood (Entelos Project)

COMPANIES CONTRIBUTING GOODS OR SERVICES:
American Express Financial Advisors (Sing to Cure MS)
An American Bed & Breakfast (Sing to Cure MS)
Antoine's Auto Repair (Sing to Cure MS)
Bertucci's (Sing to Cure MS)
Body and Soul Massage Therapy & Spa (Sing to Cure MS)
Boston Singers' Resource (Sing to Cure MS)
City Golf Boston (Tee-Off to Cure MS)
Citizens Bank (Sing to Cure MS)
Clockwork Design Group, Inc. (design)
Direct Printing and Graphics (Sing to Cure MS)
Echo Engineering (database construction)
Davidoff (Tee-Off to Cure MS)
Fore Golfers Only (Tee-Off to Cure MS)
Henry Bear's Park (Sing to Cure MS)
The Longwood Opera Company (Sing to Cure MS)
The New England Gilbert and Sullivan Society (Sing to Cure MS)
Not Your Average Joe's Restaurant (Sing to Cure MS)
The Pleasant St Congregational Church (Sing to Cure MS)
Kiwi Press (Delivery of newsletters)
MaidPro Arlington (Sing to Cure MS)
Mail Perfect, Inc. (mailing services)
Monsieur Touton Selection Ltd. (Tee-Off to Cure MS)
Teva Neuroscience (Sing to Cure MS)