[bostoncure.org] Update since 5/13/03

[Art Mellor]

Boston Cure Project informal status since last reported on 5/13/03:

>>> Joining Us This Month

o Stephanie Sisto has joined us as an Intern. She'll be helping us do
  a breakdown of where research dollars for MS get spent so we have a
  better idea of what is being covered and what isn't. We'll publish
  the results when she's done later this year. You can read about
  Stephanie here:
  http://www.bostoncure.org/about/people.php?section=3&id=47

>>> Cure Map

o More Phase 2 Genetics documents are up on the site. Check out:
  http://www.bostoncure.org/curemap/docs.php
o We signed the contract with Genomics Collaborative to do the storage
  and distribution of our samples for the pilot study. The Informed
  Consent Form and Study Protocol are being given a final review and
  the Questionaire is in development.
o The Sloan Tiger Team, who did a study on our alternativies for
  scaling the pilot up to 1,000 to 10,000 samples has finished their
  work and provided us with their results
o We've been meeting with volunteer Sujit to figure out how he can
  help with the Cure Map 

>>> Fundraising

o We have launched the Anna Peabody Fund Raffle in the next week. We
  have the tickets and have been selling them. The
  prize is $20K in cash or an Acura RSX from Herb Connolly
  Motors. Tickets are $50 each, or 3 for $100. Chances of winning are
  1 in 1800. An additional 10 prizes of $100 will be awarded. For
  details and ticket purchases, please send mail to
  melissa at bostoncure.org If you can help selling them, please get in
  touch - it's an easy way to make a difference. Details are here:
  http://www.bostoncure.org/events/eventpages/20030820_apf_raffle.php

o We launched the 'Sense of Purpose' running program to raise money
  for the Boston Cure Project. You can do this in conjunction with any
  road race you might run in that is not a fundraising race. We are
  doing this in conjunction with FitSense, and people who raise $500
  and $1000 earn cool biomonitor products from them. Details are here:
  http://www.bostoncure.org/senseofpurpose/

o The Bridgewater State College Men's Soccer Team did a juggle-a-thon
  and raised some money to help us out. Thanks Guys!

In the works:

o SAVE THE DATE:
  Our 3rd Annual Boston Cure Party will be November 22nd this year at
  the MIT Faculty club again. This is the Saturday *before*
  Thanksgiving, just like last year.

o By popular demand we are looking to run a Golf Tournament this
  fall. Melissa's husband met someone who does this for a living so we
  are discussing doing this with them. More details as we get them.

o One of our volunteers is looking into the feasability of holding a
  small opera to raise money. That should be pretty interesting!

>>> 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.

o Volunteer Michael Silton has been helping investigate how we can run
  CME (Continuing Medical Education) courses that would be approved
  for physicians.

>>> Community Building

o We revamped our web site - all the information from the previous
  site is on the news site, plus some news stuff, plus some places for
  more information later. You can now increase the text size and
  things should be easier to find. Let us know if you find any
  problems. See it at http://www.bostoncure.org

o Art and Debbie attended Alan Weinberg's support group for the newly
  diagnosed at Newton Wellesley Hospital. Alan is a great guy and the
  group of people he has assembled (not all are newly diagnosed) is
  fantastic. 

o Art and Melissa attended a Biogen talk with Dr. James Miller

o We got another article in the Boston Globe surrounding our
  announcement of signing the contract with Genomics
  Collaborative. You can read it here (Globe articles don't
  necessarily stay online very long):
  http://www.boston.com/dailyglobe2/162/business/Nonprofit_seeks_collaboration_and_a_cure+.shtml

o Art got interviewed by Larry Rosenstein for a book on people with
  disabilities that do something special about it. No information on
  when it might be available at this time.

o Hollie interviewed UCSF MS Geneticist, Jorge Oksenberg. You can view
  that here:
  http://msnews.bostoncure.org/article.pl?sid=03/06/03/1222247&mode=nocomment

o Bio-IT World
  The Globe article spawned an article in Bio-IT World:
  http://www.bio-itworld.com/news/061203_report2661.html

o Melissa and Art met with Linda Hurley of Nobles who runs the
  community services program at the Hight School. This is where our
  intern Peter Harris came from. We're looking at creating a more
  formal relationship with the school.

o Art presented the Boston Cure Project at the E-dinner, a group for
  local entrepreneurs:
  http://www.edinner.org/may_03.htm

o Art presented the Boston Cure Project to the Social Entrepreneurship
  class at Babson taught by Natalie Taylor

o We met with Debbie Dutton, the development director at the Joslin
  Diabetes Center to discuss fundraising strategies

o We met with the Wadsworth Foundation, a west coast foundation who
  gives to MS research to talk about how we might work together. They
  are currently rethinking their strategy, so the conversation will be
  ongoing. http://www.wadsworthfoundation.org/

o We saw a presentaion by People's Genetics at the MIT Tech
  breakfast. They have some interesting technology for finding
  mutations in populations of samples that may be of use to us going
  forwards. http://www.peoplesgenetics.com/

o Hollie, Art, and volunteer Kevin Wood have met with Entelos to
  discuss forming a consortium to create a computer model of MS using
  their system. Talks are still at the very beginning stage, but it's
  something that needs to happen eventually, so why not now?
  http://www.entelos.com

o Art had a nice long talk with Jane Pickett of the Autism Brainbank
  http://www.brainbank.org, and Vicky Walker who is consulting to the
  CDC to create a tissue bank for Chronic Fatigue Syndrome. We swapped
  stories and experiences. Seems like we've all got the same stumbling
  blocks. 

o We met with Ellen Frank, Marty Joyce, and Gary Magnant regarding
  some work that Activbiotics http://www.activbiotics.com/ did with
  compounds to control chlamydia pneumoniae, a bacterium that has been
  correlated with MS in some studies. We're discussing what might be
  doable next.

o We met with Jeff Protentis of Genvault to hear about their cool,
  room-temperature storage technique for genetics samples.

o Hollie met with the folks at RTI to swap stories. They are down the
  hall from us and working on a grant from the NMSS to study clinical
  records of MS patients and see if there are any major problems in
  the works.

o Hollie contacted and compared notes with an investigator at the NIH
  (Dr.  Frederick Miller) who is setting up a project similar to our
  blood/tissue bank, but for rheumatic diseases

o The Spring Newsletter is out and has been mailed. Online copy here:
  http://www.bostoncure.org/news/newsletter.php

o Work continues on George's program called Families with MS to
  address the impact of MS on families, esp. those with children with
  MS.

>>> Events

o Another Anna Peabody Fund fundraising event is happening in
  Virginia. It's a Cut-a-thon and details are here:
  http://www.bostoncure.org/events/eventpages/20030727_cut_a_thon.php

o The 2nd Annual Hunt for the Cure pictures are up for your viewing
  pleasure. If you notice any incorrect attributions, please let me
  know so I can fix them (it's hard to keep so many faces and names
  straight).

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

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

ADVICE
Debbie Dutton
Jane Pickett

APF RAFFLE
Tom Blackadar
Steve Bowler
Keff Dolan
Rob Donaldson
Brian Doniger
Glen Glater
Jill Graynor
Janelle Hamilton
Maggie Harling
Adam Hayes
Arthur and Phyllis Kaplan
Laura Kesser
Harvey Mades
Ruth Mades
Brian Mellor
Debbie Mellor
Sue Mellor
Krista Milne
Joanne Minassian
Charlie Namias
The Peabody-Kaplan Family
John Reardon
Stephanie Sisto
Ru Sweeney
Amanda Viciana

FUNDRAISING PROJECTS
Tom Blackadar/Fitsense (Sense of Purpose)
Father Bernard Marton (Fitsense Sense of Purpose)
Billy Harless (Fitsense Sense of Purpose)
Janelle Hamilton/About Face Hair Design (Cut for a Cure)
Marion Leeds Carroll (Sing for the Cure opera event)

NEWSLETTER
Maryann Boyle Murray
Margaret Doris-Pierce
Peter Harris
Cynthia King
Marcie Lascher
Debbie Mellor
Sue Mellor
Krista Milne

SCAVENGER HUNT FOLLOW-UP
Ruth Mades
Debbie Mellor
Sue Mellor
Lisa Sargeant
Amanda Viciana

SLOAN TIGER TEAM
Michelle Bernson
Josh Binder
AP Hurd
Jan Klein (team assistance)
Sara Mortenson
Rachel Sheinbein

OTHER
Peter Harris (Intern)
Michael Silton (CME project)
Stephanie Sisto (NMSS research spending analysis)
Stan Vernon (grant writing)
Kevin Wood (Entelos project)
Dr. Maggie Harling (Brochure for the Newly Diagnosed)

COMPANIES CONTRIBUTING GOODS OR SERVICES:
Clockwork Design Group, Inc. (design)
Echo Engineering (database construction)
Mail Perfect, Inc. (mailing services)
Biogen (Race to Erase ticket)
Echo Engineering (Dave Baker & Dave Burrage) are helping us with some
  internal database projects.

-- 
...............................................................................
    Art Mellor     : HTTP> http://www.bostoncure.org : Boston Cure Project
art at bostoncure.org :       * Donate Online *         : for Multiple Sclerosis
Cell> 617/899-2360 : Main> 781/788-0880              : Fax> 781/788-8118

   I never did anything worth doing by accident, nor did any of my
	   inventions come by accident; they came by work.
			   -- Thomas Edison