[bostoncure.org] Update since 11/18/2003

[Art Mellor]

Boston Cure Project informal status since last reported on 11/18/03:

>>> Joining Us This Month

Our latest employee has arrived - Meghan Maxfield - has joined us as
Operations Manager. She will be taking Andii's place at the end of
this week. You can read her bio here:
http://www.bostoncure.org/about/people.php?section=2&id=53

We have also added Fred Vinick, Senior Vice President of Drug
Discovery & Development at Genzyme. You can read his full bio here: 
http://www.bostoncure.org/about/people.php?section=5&id=52

As recently announced, we have had Jacqui McCoy and Charlie Namias
join our board of directors. Bios will be posted as soon as they get
them to me.

We'd like to thank Andii for all of her hard work laying the
operational foundations of the Boston Cure Project and making sure
things went smoothly through our first 2 years.

>>> Cure Map

The big news this month is that our Study Protocol was approved by
the Beth Israel Institutional Review Board. We have a couple minor
changes they want made, and then we'll begin negotiating a contract to
start collections with them. At that point we'll post our documents to
the web site.

We posted two new Phase 2 genetics papers to the website, covering
gene expression and protein structure, along with an update of the MS
genetic studies spreadsheet.  Drafts of the remaining two papers are
also completed so they should be posted soon as well.    

http://www.bostoncure.org/downloads/phase2-genetics-gene-expression.pdf
http://www.bostoncure.org/downloads/phase2-genetics-gene-protein-structure.pdf

We are now actively seeking pharma/biotech partner companies to join
our consortium with Entelos to develop the first dynamic computer model
of MS disease and treatment mechanisms.  We have had several preliminary
discussions and meetings with MS drug companies to describe the benefits
of this project.

Art and Hollie met with Sergio Baranzini of UCSF; he is interested in
providing scientific input to the Entelos project.  

Volunteer, Belinda Vandervoort, has begun compiling a list of all
pharma/biotech companies we can find working on MS targets. We intend
to post this list, with the status of each drug, and keep it updated
on a periodic basis.

>>> Fundraising

Fleet Foundation & Philanthropic Services has accepted our request for a 
$30,000 grant and will be sending us a check before the end of the year.

Volunteer, Belinda Vandervoort, has embarked on a personal letter-writing 
campaign which has already generated eight new gifts, contributing to the 
more than $12,000 raised through letter campaigns to date.

Mike and Sue Frech of NJ raised more than $8,000 for us through the Sense 
of Purpose Program with Mike's participation in the Philadelphia marathon 
on November 23.  This year, our Sense of Purpose program has generated over 
$18,000 in total contributions.

We received an unsolicited $4,500 grant from The Hampshire Family Fund
of the Baltimore Community Foundation.

The third annual Boston Cure Party was a great success raising close to 
$3,000 in contributions and $4,000 in auction items.  In total, the event 
grossed just under $30,000 and introduced us to many new supporters.

Volunteer David Hirschberg met with us to provide some development
advice based on his experience in the field.

>>> Education

o Thersa Hahn has been helping with some Web enhancements for our site.

o You can view the new headshots of Tim, Vince, and Ayad in our
  rogue's gallery:
  http://www.bostoncure.org/about/people.php?section=1&id=5
  http://www.bostoncure.org/about/people.php?section=4&id=46
  http://www.bostoncure.org/about/people.php?section=5&id=21

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:
  On a trip to the NYC area we met with:
  - The Montel Williams Foundation - Cheryl & Nancy
  - Jonathan Schwartz, Phil Luongo, and Jennifer Paretta
    early discussions re: starting a NY Cure Project
  - Reynold Spector ex SVP of Development for Merck
  - Met with SAB member Saud Sadiq
  - Networking meeting with Jim Goldman
  - Dinner at SAB member Vince Macaluso's house with his lovely family
  - Met with Susan Howley at Christopher Reeve Paralysis Foundation

  Additionally, we met with
  - Jerry Hirschberg & Paul Lynnette re: pharma contacts
  - Met with Michael Astrue of Transkaryotic Therapies re: FDA workings
  - discussions with Yolanda from Myelin Repair Foundation re: a
    volunteer position they need to fill

>>> Events

o 3rd Annual Boston Cure Party was a huge success
  pictures here
  http://www.bostoncure.org/events/eventpages/20031122_bcp_party.php#Start

  If you missed the event, we have a limited number of DVDs of the
  presentatinos. Email me with your name and address if you'd like to
  borrow a copy - we'll send it to you, you can send it back when you
  are done.

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

VOLUNTEERS

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

BOSTON CURE PARTY
Karine Alexander
Anna Lucy Bremner
Stephanie Bruce
Betsy Campbell
Kathleen Chanliau
Terry Clivilles
Lisa Collins
Nancy Costello
Brian Del Vecchio
Lisa Desautels
Shirley Dolins
Aaron Donaghey
Lori Falzaroni
Dr Gerald Fischbach
Chad Finsterwald
Stephanie Forrand
Amanda Gaffey
Mark Halliday
Kerry Johnson
Cher Koor
Deb Krieger
Gail Martino
Kelly McGowan
Shawn McGowan
Michelle McHugh
Asha Mellor
Brian Mellor
Debbie Mellor
Sue Mellor
Susan Morissette
Krista Milne Joy Nichols
Liz Novack
Jennifer Orr
Anthony O'Shea
Kim Pagan
Jessica Pawlowski
George Peabody
Alicia Penney, Junior League
Dr. Michael Racke
Fiona Reardon
John Reardon
Lee Reese
Sherry Reynolds
Alia Rieker
Mark Rieker
Susan Rillovick
Erika Sanders
Lisa Sargeant
Norma Shamah
Dr. Tim Vartanian
Debby Weisen
Jen Wise
Bruce Wright
Elizabeth Oehlkers Wright
Robyn Yearwood

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

FITSENSE SENSE OF PURPOSE PROGRAM
David Agatstein
Tom Blackadar/Fitsense
Mike Frech
Tal Viskin

SLOAN TIGER TEAM
John Capello
Emeka B. Iffih
Jeff Kim

OTHER
Mark Halliday (Solicitation Video)
Bill Herron (Database Transfer Project)
Sujit Purkayastha (Cure Map & India group set-up)
Stephanie Sisto (NMSS Research Spending Analysis & MS Social)
Belinda Vandervoort (Drug Treatments for MS Mapping)
Pam Wolf (Recruitment)
Kevin Wood (Entelos Project)

BOSTON CURE PARTY SILENT AUCTION DONORS
Arnold Palmer Golf Enterprises
Boston Red Sox
Boyajian Inc.
CommonGoals
Dellaria of Peabody
Expo Design Center
Frank Siteman Photography
Great Frame Up
Holly Go Lightly
iRobot
Jaras Designs
Just Books
Kiss-MeKate
Lighthouse Computing Services
Mohegan Sun
MotorLegends.Com
Seaport Hotel
Upstairs @ the Square
Stephanie Anderson
Kate Cosentino
Glen Glater
Dr. Maggie Harling
Erik & Pirjo Heels
Cher Koor
Art & Debbie Mellor
Elizabeth Michaud
Sue Mellor
Tom Myrva
Cheri Parker
Peter & Hollie Schmidt
Steve Willis

NEW YORK CURE PROJECT
Philip Luongo
Jennifer Paretta
Jonathan Schwartz

COMPANIES CONTRIBUTING GOODS OR SERVICES:
Clockwork Design Group, Inc. (design)
Echo Engineering (database construction)
Mail Perfect, Inc. (mailing services)
Marriott Boston Cambridge (Hotel room for Dr. Fischbach)