[bostoncure.org] Status April 15

[Art Mellor]

Boston Cure Project informal status since last reported on 3/18/03:

>>> Fundraising

The Watercove Charitable Foundation Matching Challenge is about to
come to an end. Please help us receive the entire $50K gift.  The
amount by which your 2003 contribution exceeds your 2002 contribution
is the amount that qualifies for matching!  We must receive your gift
by April 30!

You can support our efforts by contributing here:
http://www.bostoncure.org/default.php?nav=involved

Melissa joined an 8-week AFP Fundraising Course and is making lots of
connections with other fundraisers, learning lots of good things.

Received support and interest from Senator Kennedy's office, who did
some research on our behalf and contacted Dr. Utz at the NIH to
arrange a meeting (coincidentally we were already in contact with
Dr. Utz).  They've asked us to let the NIH know that we have Senator
Kennedy's full support and report back to their office on our
progress.

David Blohm, Krista Milne, and Jacqui McCoy have pitched with letter
writing campaigns that have produced a great response far. We'll
happily help anyone who would like to do a letter writing campaign (we
have sample letters), just reply to this email indicating interest.

We also benefited from the insights of Sue Heileman from another
nonprofit - Horizons Initiative - on ways to approach fundraising. 

>>> Joining Us This Month

- Peter Harris has joined us as a High School inter from the Noble and
  Greenough School. He is coming in every morning and helping us with
  activities ranging from MSNews to distributing our PSA tapes to
  developing a new event that we'll be announcing soon.

- Dr. Jim Khalifa is the Head of Medical Affairs at Teva and has
  agreed to join our Pharmaceutical Advisory Board. We'll post a bio
  as soon as we get it. 

>>> Cure Map

We have finished the first drafts of the genetics phase 2 documents on
Mendelian and incompletely penetrant genetic defects. We have 4
previously completed phase 2 documents out for review. As soon as they
have all been reviewed we'll announce their availability.

Hollie and Art attended the American Academy of Neurology meeting in
Hawaii at the beginning of the month. In spite of the locale, we were
able to do some real work - seeing many presentations and meeting with
critical researchers from around the country. You can read our write
up of the trip here:
http://msnews.bostoncure.org/article.pl?sid=03/04/09/110237&mode=nested

You can also see some pictures of Art's vacation weekend he took at
the end of the conference here:
http://www.scumpa.com/~art/hawaii03/

The MIT Sloan school "tiger team" continues to work on characterizing
the expense structure for scaling the blood and tissue bank up to
thousands. 

Art had his first neurological appointment as part of a longitudinal
natural history study he is participating in at the Brigham with
Dr. Weiner. Here's a cool picture of his brain from that study:
http://www.scumpa.com/~art/art-brain/

We also managed to get a large set of sample documents relating to a
Lupus Study in Oklahoma that is similar in nature to what we are
doing. The staff there has been very helpful in sharing information to
help us design our study.

>>> 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.

>>> Community Building

While at the AAN we were able to meet with many researchers and doctors:

- Bernadette Kalman
- Tom Leist
- Dennis Bourdette
- Daniel Pelletier
- David Simon
- Claudia Lucchinetti
- Bruce Trapp
- Jim Khalifa
- Alberto Ascherio

We also met up with Liana Mark who has MS and is Miss International
(and spoke at our Kick-Off meeting when she was Miss Waikiki).

Art has been fielding an larger number of calls from people with MS
and people with friends with MS looking for answers about the
disease. 

In addition, 2 Boston Cure Project people - Tim Vartanian and Krista
Milne - were quoted by the Globe in an article about EBV antibody
titers and MS.

We had a good phone call with Alan Hudson about the viral causes of MS
and the approaches that will be necessary to determine what role they
might play. 

Kathleen Hawker from UTSW was in town on business and we managed to
get out to dinner with her and have some fun in the pouring rain.

>>> Events

o We attended the AAN as described above

o Preparations for the scavenger hunt are going very well.  We have 7
  corporate sponsors and 24 teams pre-registered.  We need more teams
  though!  Help us recruit people to participate in this fun event.
  Sign up as soon as possible at http://www.bostoncure.org/hunt/

o The Boston Marathon will take place on April 21 and we will have a
  small table on heartbreak hill where supporters can make
  contributions, buy t-shirts, and pick up more details about the
  organization.

o Art spoke on a panel at MIT on Socially Responsible Careers to an
  audience of undergraduates and graduate students. He denied any
  social responsibility.

o He also attended a leadership training class run in part by Director
  George Peabody via his day job http://www.climbing-trees.com

o The Scavenger Hunt will be run again on May 10th. We need volunteers!
  Send mail to Lisa Sargeant at lisa at bostoncure.org saying you'd like to help.

Pre-announcements:

o The Anna Peabody Fund will raffle off the choice of a new Acura RSX
  or $20,000 in cash.  The car has been identified, tickets are being
  designed, and a venue for the actual drawing will be selected this
  week.  We expect to start selling tickets on May 1. We'll announce
  this separately

o The launch of the Fitsense "Sense of Purpose" program has been
  slightly delayed but looks good for this month.  This program is
  open to runners who wish to raise money for the Boston Cure Project
  by running in unsponsored races.  Fitsense will provide rewards
  (free wireless biomonitors and training devices) to runners who
  raise $500 and $1,000.  Stay tuned for more details.

>>> Volunteer Efforts

Volunteer Staff
 - Sue Mellor
 - Debbie Mellor
 - Peter Harris

Sense of Purpose/Fitsense fundraising program
 - Tom Blackadar
 - Anthony O'Shea
 - Debbie Mellor

Families with MS (an effort in development, to be announced)
 - Krista Milne
 - George Peabody

Letter Writing Campaigns
 - Peabody/Kaplan family
 - Jacqueline McCoy
 - Krista Milne
 - David Blohm

Advisors
- Wendy Booker
- Jacqueline McCoy
- Debby Wiesen

Acquisitions
- Pearl Freier

BCP Web Site (handed off to Art!)
- Theresa Hahn

Anna Peabody Fund Raffle
- Clockwork Design Group, Inc.
- Robert Drake
- Nancy Kaplan
- Charlie Namais
- George Peabody

MS News
- John Dunphy
- Peter Harris

PSA
- Peter Harris

MS Social
- Peter Harris

Database Work
 - Mark Dombeck

Continuing Medial Education Investigation
 - Michael Silton

Scavenger Hunt
- Dena Barisano
- Shauna Barry
- Molly Corbett
- John Dunphy
- Mary Dyer
- David Flannery
- Maggie Harling
- Ken Kuperstein
- Kimberly Labow
- Harvey Mades
- Dan Marean
- Brian Mellor
- Debbie Mellor
- Sue Mellor
- Krista Milne
- Joanne Minassian
- Anthony O'Shea
- Alicia Penney
- Linda Pirie
- Chuck Potier
- Nasir Rana
- Fiona Reardon
- Jeffy Ross Demeter
- Stephanie Sisto
- Amanda Viciana
- Debby Wiesen