[bostoncure.org] Status since last reported on 8/17/04

[Art Mellor]

Boston Cure Project informal status since last reported on 8/17/04:

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

>>> Joining/Leaving Us This Month

o Previously we announced that Mike Yashko had joined our Board of
  Advisors, and now you can read his bio:
  http://www.bostoncure.org/about/people.php?section=6&id=65

>>> Cure Map

o We collected our first sample for the blood, tissue, and data bank!
  It was collected on September 1st at UMassMemorial. We're officially
  off and running! Picture of historic event is here:
  http://www.bostoncure.org/events/biggerpic.php?image=/events/tshirtpics/bcp-first-blood-med.jpg&title=T-Shirt%20Photos

o The Phase 1 documents on nutrition and toxic agents written by our
  summer interns are in their final phases of review and editing.
  Anyone who is interested in helping to review and comment on them
  should contact Hollie Schmidt at hollie at bostoncure.org.

o We finally got a signed contract from Beth Israel, so we have gone
  in and trained their staff on the protocol. We should be up and
  running there in the next few weeks.

o Art was invited to attend the annual meeting of the Myelin Project
  (http://www.myelin.org) in Nice France this past weekend. But due to
  a mechanical problem with his Air France plane, he never got off the
  ground. Bummer.

o Art read a pretty decent overview of the current state of MS drug
  companies, written from a financial analyst's perspective. It
  includes some good history on the drugs and is a good way to come up
  to speed. It's pretty long, but worth checking out:
  http://sykepleier.net/filer/ms_market_report.pdf

>>> Fundraising

o With the help of Alison Glastein, we've been updating our grant
  proposal and working to identify private foundations interested in
  funding our work.  Volunteer, Melanie Erickson is helping us
  identify corporate grantmakers.

o Melissa has been working to contact Pharmacy Benefit Managers to
  obtain funding for the publication and distribution of our newly
  diagnosed brochure, "So you have MS... What's Next."
  http://www.bostoncure.org/downloads/bcp-ms-whatsnext.pdf

o Thanks to all those who have given generously in response to our
  July appeal which was mailed out mid-summer.  We're pleased to
  announce that the appeal has generated close to $4,000 in
  contributions.  If you haven't had a chance to make your annual gift
  yet, you can still do so by making a credit card on line at
  http://www.bostoncure.org/about/contribute.php

>>> 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
  - Melissa made a new contact within the Rebif marketing team of
    Serono and Pfizer and she and Art will be meeting with those folks
    later this week. 
  - Melissa and Art met with advisor, Fred Marx.
  - Melissa met with Lisa Barker of Teva Neuroscience.
  - Melissa and Julie had a conference call with a representative from 
    AuctionPay to investigate their on-site, event credit card
    processing system. 
  - Melissa and Art met w/Deb Kearny re:PR for the November event
  - Art talked to Tim Coetzee of the NMSS re: tissue banks and how we
    might work together
  - Art attended Vicky Wu's nonprofit/social entrepreneur kick-off meeting

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

>>> Events

o This weekend! Join us for "A Labyrinth Walk," a relaxing and
  meditative experience taking place 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.  It is
  important to RSVP before Saturday so please contact Lisa Desautels:
  617-965-9659 or lisadesautels at comcast.net.
  http://www.bostoncure.org/events/eventpages/20040918_labyrinth.php

o Also this weekend, Boston Cure Project will have a table at Teva's
  patient marketing seminar featuring Kelly "Girl" Sutton, Sunday
  September 19 at the Newton Marriott.

o Looking for one last excuse to play golf this year?  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).  The club 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.

o Join us for "Sing to Cure MS" a very special classical music concert
  featuring Halloween-themed songs and arias as performed by some of
  Boston's finest singers Sunday evening, 10/24, at the Pickman
  Recital Hall of the Longy School of Music just outside of Harvard
  Square in Cambridge.  To purchase admission, please contact Ruth
  Seidman at rkseidman at comcast.net or 617-734-7820.
  http://www.bostoncure.org/events/eventpages/20041024_sing_to_cure.php

o The "Cuts to Cure MS" Cut-a-thon is set to take place 11/7/04 at
  About Face Hair Design in Norfolk, VA and we are seeking additional
  hair salons to participate.  Please contact Janelle Hamilton or
  Sarah Conklin for further details about how to participate,
  757-624-3500.

o Our 4th Annual Boston Cure Party is happening Saturday evening,
  11/20, at the MIT Faculty Club in Cambridge.  This year our event
  features Dr.  Kristin Ardlie, Vice President, Genetic Research of
  Genomics Collaborative Inc. as well as Bradley Whitford* of NBC's
  "The West Wing."  Join us for this elegant and informative evening
  out.  RSVP by calling us at 781-487-0008 or going to
  http://www.bostoncure.org/rsvp full details here:
  http://www.bostoncure.org/events/eventpages/20041120_bcp_party.php

  *Barring unforseen production schedule conflicts

o Those of you thinking about holiday travel should check out "Cruise
  to Cure MS," a 6-night Caribbean cruise with stops in Jamaica, Grand
  Cayman, and Cozumel happening 1/16/05 -1/22/05.  More details are
  available at
  http://www.bostoncure.org/events/eventpages/20050116_cruise.php

>>> Operations

o Our network problems with Speakeasy/Covad/Verizon got much, much
  worse for a while, taking us out for an entire week. After extensive
  screaming and ranting, we managed to get what turned out to be 3
  separate hardware problems resolved. We have also installed a backup
  network link from another provider to minimize chances of a repeat.

o Melissa hosted a barbecue at her home on 8/20 for Boston Cure Project board 
  and staff members.

o This month is a little light on items to report due to summer
  vacations, but we'll be back full-strength next month.

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

August Volunteers

* 2004 Cuts for a Cure:
Sarah Conklin
Janelle Hamilton

* Administrative Assistant:
Sue Mellor

* Analysis of Research Spending Dollars for MS Organizations
Stephanie Sisto

* BCP Concert:
Marion Carroll
Amanda Song
Rebecca Enright

* Bike-a-thon
Jay Batsn
Judy Batson

* Boston Cure Party:
Debbie Mellor
Bill Meyer
Elinor Nelson

* Cruise to Cure MS
Judy Medeiros
Nancy Medeiros
Irene Simas

* Donor Database:
Dave Kaffine

* Fundraising
Melanie Erickson
David Lekis

* Labyrinth
Lisa Desautels
Jill Mackavey

* Neuroanatomy Paper
Jennifer Tobin

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