[bostoncure.org] Status Since 11/16/2004

[Art Mellor]

Boston Cure Project informal status since last reported on 11/16/04:

Information on our other mailing lists is at the bottom of this message.

*** YEAR END APPEAL ***

Please consider making a $25 contribution (or more, of course :-)
right now by clicking on the link below. The faster we can collect
samples, the faster we can look for the causes of MS. Right now, all
it takes is money to speed up this process.
http://tinyurl.com/479aw

*** YEAR END APPEAL ***

>>> Joining/Leaving Us This Month

o We are happy to announce that Professor Gerald Sussman at MIT has
  joined our Scientific Advisory Board. His expertise in applying
  engineering to different fields as well as his extensive computer
  science background will be extremely helpful to us as we move
  forward. You can read more about him here:
  http://www.bostoncure.org/about/people.php?section=4&id=70

>>> Cure Map

o The collection of samples continues as does the design of the
  follow-on collection. We are in the process of planning and
  budgeting for this project in 2005.

o We posted the Phase 1 document on nutrition to our web site -- only
  the trauma document remains to be written.  Hollie is continuing her
  work on the Phase 2 infectious agents documents.
  The Nutrition document is available here:
  http://www.bostoncure.org/downloads/phase1-nutrition.pdf

o Hollie continues to work on the collaborative review of the HLA DR2 
  haplotype's involvement in MS.  A first full draft of this paper is now 
  complete.

o Adviser Eric Hovde spearheaded a project to contact the CEO's of
  biotech and pharma companies to urge them to consider working on
  MS. The result of this extensive letter campaign is many interested
  inquiries that Art is now following up on.

o Art attended an IRB training on Investigator Initiated Research

>>> Fundraising

o Art and Melissa met with Fred Marx who introduced us to one of the
  trustees of the Arcadia Foundation to discuss possible funding
  opportunities.

o Congratulations to Jeremy Zirin of Brooklyn, New York who raised
  over $2,000 for Boston Cure Project running the Philadelphia
  Marathon on 11/21 and qualified for the 2006 Boston Marathon by
  finishing in under 3 hours, 15 minutes, 59 seconds.

o The Boston Cure Project Expansion Team program is making great
  strides with two new funds, The Yashko Family Fund and Sherri's
  Cause, launched and actively generating funds for our work.  If
  you're interested in starting an Expansion Team and your own family
  or regional fund, contact Melissa O'Shea melissa at bostoncure.org

>>> Education

o More volunteer book reviews have come in. You can see them here:
  http://www.bostoncure.org/msresources/library.php#bookreviews

o A very interesting interview of Dr. Brenda Banwell, who treats and 
  studies pediatric MS, is also now posted on our web site.
  http://www.bostoncure.org/downloads/interview-banwell.pdf

o You've probably heard - Antegren (now called Tysabri) has been
  approved by the FDA. You can read the product insert here:
  http://msnews.bostoncure.org/article.pl?sid=04/12/03/1353220&mode=nested

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 As announced at our Boston Cure Party event, we have been selected
  by the John Hancock Long Term Care Group as their "pet" charity for
  2005. In January we will formally announce this project, but they
  are helping us in our national roll-out, providing a cash grant of
  $50,000 and providing us with Boston Marathon numbers as well as
  significant volunteer efforts for our 2005 projects. In addition we
  will announce a new board member from Hancock in January.

o As we reach out to a more national audience, we have decided to use
  an umbrella name for the national effort with regional affiliates
  for local presence. The Boston Cure Project will be the headquarters
  and Boston affiliate. After polling our scientific advisory board
  and volunteer list, factored in domain name, trademark, and other
  considerations, we have settled on the name

  Accelerated Cure Project for Multiple Sclerosis 

  as our national brand. We'll have a plan for rolling this out and
  using it in the coming month or two. We'll keep you posted. Thanks
  to everyone who participated in our survey.

o We had a number of meetings and phone calls:
  - Art attended Alan Weinberg's Core Connections group
  - Art met with Joel Baron who is helping us get access to papers online
  - Eric Tenenbaum met with us to discuss possible key introductions
  - Art attended Vicky Wu's Social Entrepreneurs EMSI meeting
  - Melissa and Art met with supporters including the DeBoyers from
    Michigan and the Linets
  - Art met Phil Sharp, Biogen co-founder and Nobel laureate at an MIT
    technology breakfast

o Art and Melissa met with Peter Schmidt who is putting together volunteer 
  qualifying and user manual for us.

o Melissa and Art had a conference call with Marla Madison, founder of
  My Shoes (http://www.myshoes.org.uk), a UK-based MS fundraising
  initiative that revolves around the women's shoe industry, to
  discuss how we might collaborate to take on a similar effort here in
  the U.S.

o Harvard Business Students, Elise Vincens, Cara Critzer, and Robert
  Hester, finished their project of market researching the concept of
  Boston Cure Project creating a more formal collaboration between the
  various MS organizations, a concept we hope to continue exploring
  for the future.

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

>>> Events

o The Fourth Annual Boston Cure Party for MS was a fabulous success
  raising over $36,000 through donations, sponsorships and auction
  items.  Thanks to the many generous volunteers, sponsors, speakers,
  and contributors who made the event possible.  Pictures and details
  posted here:
  http://www.bostoncure.org/events/eventpages/20041120_bcp_party.php#Start

o The results of the Cuts to Cure MS salon-a-thon are in and the
  photos are posted.  Thanks to Janelle Hamilton of About Face Hair
  Design of Norfolk, VA, the staff, additional salons, and many
  volunteers who participated, the event raised a total of more than
  $6300 and we are already looking for additional salons, nationwide,
  to participate next year.  Contact us if you know a salon that would
  like to participate 781-487-0011.  Pictures and results are posted
  here:
  http://www.bostoncure.org/events/eventpages/20041107_cuts_to_cure.php

>>> Operations

o Dave Kaffine continues to improve the donor tracking database he has
  created for us.

o We continue to receive accounting lessons from volunteer Jill
  McGaffigan of Lifting Mind consulting.

o Our 2005 budget and fundraising plans are being worked on feverishly.

o The Boston Cure Project offices will be closed December 28-31.

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

November Volunteers

* 2004 Cuts for a Cure
Sarah Conklin
Janelle Hamilton
Dr. & Mrs. Arthur Kaplan

* Accounting Advice
Jill McGaffigan

* Administrative Assistant
Sue Mellor

* Book Reviews
Lisa Desautels

* Boston Cure Party
Bradley Whitford
Kristin Ardlie
Rip Kinkel
Sue Mellor
Debbie Mellor
Jill McGaffigan
Leslie Wolf
Rachel Golub
Lisa Desautels
Jane Shapiro
Nancy Costello
Patrice Connelly
Rosemary Panza
Julie Gershon
Kelly McGowan
Shawn McGowan
Hollie Schmidt
Bill Meyer
Debra Robison
Fiona Reardon
Kim MacDonald
Kelly Chanliau
Jen Tobin
Lisa Sargeant
Michele McHugh
Karen Kivisto
Pete Mellor
Asha Mellor
Kim Pagan
Marie Rudzinsky
David Rudzinsky
Rose Gershon
Karen Donoghue
Melissa O'Shea
Anthony O'Shea
Gail Martino
Marsha Zabarsky
Alexandra Wright
Barbara Morgenlender
Ellie Nelson
Bob Bargar
Peter Schmidt
Marion Leeds Carroll
Jeff Shapiro
Eddy Fava
Rebecca Small
Caroline Michaud
Theresa Beach
Jeanne Hambelton
Joanne Geary
Michelle Feeley
Danielle Coutu
Stephanie Bruce
Donna Greenan
Lesley McAdams
Lisa Tasker
Dave Cosentino
Kate Cosentino
Robyn Sandrew
Dave Henderson

* Donor Database
Dave Kaffine

* Equipment Procurement
Frank Sisto
Natasha Case
Juanita Contreras

* Fitsense Sense of Purpose
Jeremy Zirin

* Fundraising
Ray Desautels

* HBS MS Collaboration Project
Cara Critzer
Elise Vincens
Robert Hester

* Junior League Project
Susan Dunn

* MSNews
Brian Del Vecchio

* Neuroanatomy Paper
Jen Tobin

* NMSS Research Spending Analysis
Stephanie Sisto

* Volunteer Introduction Document
Peter Schmidt

* Contributed Goods and Services
Stephanie Anderson
David Blohm
Debbi Milligan
Asha Mellor
Newton Marriott
Library Hotel
Mohegan Sun
Bob Bargar & Ellie Nelson
Andrew Nelson
Four Seasons Hotel Boston
Rosalind Joffe
Art & Debbie Mellor
Jonathan & Leslie Wolf
Lisa Sargeant
Deb Krieger
Expo Design Center
Manny Lipson
Peter & Hollie Schmidt
Sue Mellor
Maggie Harling
Ocean Edge Resort & Golf Club
Ray Desautels, Sr.
Boyajian, Inc.
Denise Desautels
Kate Polcari
Denis Hunt
PRP Wines of Massachusetts
Mercury Interactive


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