[bostoncure.org] status since last reported on 7/19/04

[Art Mellor]

Boston Cure Project informal status since last reported on 7/19/04:

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

>>> Joining/Leaving Us This Month

o Our MIT Interns, Brian and Irene, are completing their final week
  with us and will be back off to school

o We've contracted Alison Glastein of PEAR Associates to help us jump start 
  our foundation grant research and applications.

>>> Cure Map

o Julia Chang & David Kuo helped us map out the flow for the tissue
  bank study and walked us through a dry run of the process for a
  subject. 

o Peter Riskind's group at UMass is officially activated! The first
  study visit is scheduled for September 1st. We'll send out an
  announcement as soon as the first sample hits our banking facility. 

o Beth Israel's legal department is still moving at a snail's pace
  (having been lapped by the speedy UMass team). We continue to pester
  them with minimal effect.

* Our interns Brian Keegan and Irene Rahman are finishing up their
  work on the Phase 1 documents for the nutrition and toxic agents
  tracks of the Cure Map.  It's been wonderful having them on board
  this summer!

* Hollie continues to work on Phase 2 of the infectious agents track
  as well as the collaborative review of HLA DR15's genetic
  association with MS.

* The grant application we submitted to the NIH last fall for tissue
  bank funding was returned with comments (apparently this is not an
  unusual occurrence).  The comments all seem straightforward to
  address, so we will take the opportunity to respond to them and
  resubmit the application by the November 1 deadline.

>>> Fundraising

o The Expansion Team Program, through which Boston Cure Project
  supporters may create family or regional funds to benefit the Boston
  Cure Project, is off to an amazing start with over 50 people across
  the US and Canada already signed up and participating.  If you're
  interested in starting a fund in YOUR region, contact Melissa O'Shea
  for more details: 781-487-0011 or melissa at bostoncure.org.

>>> Education

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 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 We had lots of meetings and phone calls with people
  - Jay Batson regarding task management software we might find useful
  - Art launched the first of a series of gatherings for people
    involved in small nonprofits to get together and share tips
  - Art talked at length with Bill Brayer of mshelp.org, a very
    interesting organization that provides equipment to the disabled
  - Art talked to Katie Clapp of FRAXA.org
  - Art and Hollie met with Al Sandrock and some of the Antegren folks
    from Biogen Idec to get a variety questions answered
  - Art and Melissa met with John Hikel of Solo Rider to see a demo of their 
    cool golf cart which enables those with mobility issues to stand and golf
  - Art met with Amy Carrier who runs an excellent group for young
    women with MS in Boston
  - Hollie and Art visited Prof. Eric von Hippel of MIT Sloan School
    to discuss ideas concerning drug availability and medical research

o Melissa and Art continued discussions with Brad Saul regarding
  possibly doing a series of short radio spots highlighting MS News

o Hollie, Art and Brian each went to the Drug Discovery Technology 
  conference in Boston to check out the latest medical research offerings.

o Art and Hollie attended MIT's 3rd annual Biotech Celebration to hobnob 
  with people active in the local biotech and pharma communities.

o Press
  We announced our collaboration with Blue Sky Collaborative with this
  press release (which was picked up by various internet sites):
  http://www.bostoncure.org/news/pr/20040727_bluesky.php

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

>>> Events

o Pictures from our Golf Tournament are up:
  http://www.bostoncure.org/events/eventpages/20040712_golftourney.php#Start

o Our first Expansion Team is The Medeiros Family Fund of Somerville,
  MA and they've already organized their first fundraiser, "Cruise to
  Cure MS," a 6-night Caribbean cruise commencing January 16, 2005 for
  which you can reserve your spot by contacting Irene Simas at
  781-229-1900.
  http://www.bostoncure.org/events/eventpages/20050116_cruise.php

o Sing to Cure MS is the Boston Cure Project's annual classical music 
  concert, which this year is scheduled take place on Sunday evening, 10/24, 
  at the Pickman Recital Hall, Longhy School of Music, Harvard Square, 
  Cambridge, MA.  Stay tuned, more details to come.

o Cuts to Cure MS, the annual "cut-a-thon" organized by About Face Hair 
  Design of Norfolk, VA is scheduled to take place this year on Sunday, 
  November 7.  If you know of any other hair salons that might be interested 
  in participating, please contact Melissa O'Shea for details 781-487-0011.

o Join us for "A Labyrinth Walk," a relaxing and meditative experience
  featuring a 36' canvas labyrinth on which to walk and inwardly
  reflect, Saturday, 9/18 from 10am to 2pm at Noyes Hall, Andover
  Newton Theological School in Newton Centre, MA.  The cost is a $25
  donation to the Boston Cure Project.  For further details and to
  RSVP, contact Lisa Desautels: 617-965-9659 or
  lisadesautels at comcast.net.
  http://www.bostoncure.org/events/eventpages/20040918_labyrinth.php

o Our Fourth Annual Boston Cure Party is scheduled to take place
  Saturday evening, November 20 at the MIT Faculty Club in Cambridge,
  MA and will feature guest speakers (a big name in the works) as well
  as a special "in-person annual report" by co-founders Art Mellor and
  Dr. Timothy Vartanian.

o The Goffstown Rotary is hosting a charity golf tournament on 9/22 at
  Stonebridge Country Club in Goffstown, NH which costs $90 person
  (including lunch), and it will donate a portion of the event
  proceeds to the Boston Cure Project if we can generate some players
  and sponsors for it!  Contact John Hikel 603-860-7891,
  iteachgolfeasy at aol.com if interested and be sure to mention that you
  heard about it from us.

>>> Operations

o We've had a series of problems with our network involving our ISP
  Speakeasy, their provider Covad, and the phone company
  Verizon. After considerable screaming we managed to get it escalated
  to the appropriate levels and it seems to be working again (no fewer
  than 3 separate equipment problems were found). We have ordered
  backup service from another provider.

o Art recently read 2 books on MS that you might find interesting:
  - Life on Cripple Creek: A collections of musings on life with MS
    that are very well written and entertaining.
  - Curing MS: an interesting history of MS research from the
    perspective of one of the more noted MS researchers.

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

2004 Cuts for a Cure:
Sarah Conklin
Janelle Hamilton

Administrative Assistant:
Sue Mellor

BCP Concert:
Marion Carroll

Boston Cure Party:
Debbie Mellor

Donor Database:
Dave Kaffine

July Appeal:
Barbara Morgenlender
Stephanie Sisto

Labyrinth
Lisa Desautels
Jill Tagliaferri

Legal Services:
Roger Glovsky

Marketing/PR Advice:
Gabe D'Anunzio
Bill Meyer

Donated Goods and Services
Clockwork Design Group, Inc.
Art Mellor
Mail Perfect

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