[bostoncure.org] since 7/15/03

[Art Mellor]

Boston Cure Project informal status since last reported on 7/15/03:

>>> Joining Us This Month

o Unfortunately one of our newer Pharmaceutical Advisory Board members
  (Jim Khalifa) from Teva has left the company. We are talking to Teva
  about finding a replacement.

>>> Cure Map

o We have our first draft of the study protocol and informed consent
  formatted for submission to the Beth Israel Institutional Review
  Board. We are waiting on the answers to a few more questions and the
  final produciton of our questionaire. It's so close we can
  practically taste it!

o We posted two new Phase 2 genetics Cure Map documents that address
  whether a single gene could be sufficient to cause MS or whether
  multiple factors are required:
  http://www.bostoncure.org/downloads/phase2-genetics-polygenic.pdf
  http://www.bostoncure.org/downloads/phase2-genetics-mendelian.pdf

o We posted our second in a series of interviews with leading MS
  scientists, this one with virologist Steve Jacobson of the NIH 
  http://www.bostoncure.org/downloads/interview-jacobson.pdf

o Our volunteer Sujit Purkayastha, who is helping us develop the Cure
  Map, has started taking steps to set up an affiliate organization in
  India (our first affiliate!)

o Our intern Stephanie has made great progress on analyzing and
  categorizing the current MS research projects funded by the NIH and
  NMSS (the bulk of publicly funded MS research) that we will use to
  get a better sense of where work is currently being done.

>>> Fundraising

o The first annual "Cuts for a Cure" (which will be renamed) in
  Virginia went off beautifully thanks to the folks at About Face Hair
  Design. Pictures from the event are here:
  http://www.bostoncure.org/events/eventpages/20030727_cut_a_thon.php

o The Raffle Drawing will be this Wednesday evening - who will be the
  lucky winner? 

o Plans for the Golf tournament in October are in full swing (see below)

o We met with one of Fleet's foundation representatives and they have
  expressed some interest.

o Boston Cure Project received a generous gift from the Edmond
  J. Medeiros Foundation of Somerville.  The gift was made in loving
  memory of Edmond J.  Medeiros by his sisters Nancy and Judy who
  started the fund in his name to raise money for their community in
  general and for MS research.

o Rosalind Joffe, Boston Cure Project volunteer, is leading our
  campaign to increase Boston Cure Project membership and exposure in
  Connecticut, New Jersey, and New York.  She's contacting local
  support groups, neurologists, and supporters in those areas and
  asking them to spread the word of Boston Cure Project's work.  If
  you'd like to do a similar campaign in your state, please contact us
  to learn more.

o Upcoming Fundraising Events are listed below in the Events section

>>> Education

o We'll be holding an educational Seminar in September to go over the
  results of our Phase 1 and Phase 2 genetics work. Details to be
  announced shortly.

o And while not strictuly educational, it's on our web site - we have
  new pictures of people wearing Boston Cure Project t-shirts at:
  http://www.bostoncure.org/events/tshirt.php

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. There is now a link to
  MSNews on our main menu at our web site.

>>> Community Building

o We had a minor run-in with the Susan G. Komen Breast Cancer
  Foundation over use of the phrase "For the Cure" which resulted in
  some press for us:
  http://www.bostoncure.org/news/bcp/20030726.php

o We got another article in BioIT World about our approach and some
  organizations who think similarly in other areas:
  http://www.bio-itworld.com/archive/081303/horizons_drug.html

o Our first "MS Social" was a huge success and a great time - check
  out the pictures here:
  http://www.bostoncure.org/events/eventpages/20030804_mssocial.php

o Art attended a talk sponsored by Teva and the MSAA - the first event
  the MSAA has had in the Boston Area.

o At the suggestion of the NIH nonprofit liason, Art is applying for
  appointment to the Council of Public Representatives. It's not clear
  if he'll be selected, but it will be fun if he is:
  http://copr.nih.gov/

o Art and Stephanie got filmed for George's "Families with MS" DVD

o Our latest Newsletter has been mailed and is available on the web
  http://www.bostoncure.org/downloads/bcp-update-vol0202.pdf

o We've been meeting with people at other organizations:
  - Art had dinner w/volunteer Maggie and Steven Triedman of the RI NMSS
  - Hollie and Art had a great meeting with Arlyn White and Linda
    Guiod of the NE NMSS and have begun discussions on how we can work
    together more.
  - Art met with Linda Kapust, Senior Social Work Supervisor at the
    Beth Israel to tell her about our organization and what it can do
    for the people with MS whom she encounters.
  - Melissa and Art had a good lunch with Cindy Goodenberger and Lisa
    Barker from Teva to talk about ways we can work together
  - Hollie and Art met with the Bio Engineering group at MIT to
    discuss their work and get an understaning how it might apply to
    MS. 
  - Hollie and Art attended a neuro-protection meeting at the Beth Israel

>>> Events

o Raffle Drawing, August 20 - Arlington, MA.
  Some lucky person will win a new car or $20,000 in cash.
  http://www.bostoncure.org/events/eventpages/20030820_apf_raffle.php

o Teva Seminar, September 6th -  Foxwoods Casino, CT.
   Boston Cure Project will appear at Teva's
   September seminar featuring race car driver,
   Kellie Sutton.  A table will be set up at which
   we will distribute information about our
   organization. Specific time to be determined.

o Plans for our first annual "Tee off to Cure MS" are officially
  underway.  For details on how to participate in the Boston Cure
  Project's golf tournament on October 8, contact Hank Tuohy of Old
  Colony Sports at (508) 477-5355.  The event will take place at
  Pinehills Golf Club, recently selected as one of the top 10 new
  courses in the country by Golf Digest.  Tickets are $300 per person,
  $1200 per foursome.  Corporate sponsorship packages are also
  available.

o Chicago Marathon, October 12 - Chicago, IL
   Father Bernard Marton of Irving, TX will be
   running in the Chicago marathon to raise money
   and awareness for the Boston Cure Project.  Through
   our Fitsense "Sense of Purpose" program for Runners,
   Father Marton has already raised close to $5,000 and
   has received free wireless training devices
   donated by Fitsense.  Fitsense will be tracking
   his progress through the marathon.  For more
   details see http://www.bostoncure.org/senseofpurpose

o "Sing to Cure MS: The Boston Cure Project Halloween Concert" will
  take place on October 26.  The event will be held at the Pleasant
  St.  Congregational Church in Arlington, MA and will be comprised of
  seasonally appropriate classical music and song.  Look for details
  on our web page later this week for more details about what the
  event will entail.

o Marine Corps Marathon, October 26 - Arlington, VA
   Billy Harless of Bowie, MD is running all summer
   to raise money for BCP through the Fitsense Sense
   of Purpose program.  You can read more about him
   in our upcoming newsletter and may make a
   contribution to sponsor his effort by sending
   a check to Boston Cure Project, 13 Belton St.,
   Arlington, MA 02474.  Designate Billy in the memo
   field.  Billy's final race is the Marine Corps
   Marathon on October 26 in Virginia.

o BCP Party, November 22 7pm - Cambridge,MA
  Our big annual event, we'll be sending out more details soon.

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

FUNDRAISING EFFORTS
George Peabody Birthday Party
Peabody-Kaplan Appeal
Susan Mellor Appeal

FUNDRAISING OF NOTE
Arthur Kaplan selling morfe raffle tickets by himself (don’t know 
if she would want that public or not), anyone else selling outstanding amount
Emily Jones buying $1,000 worth of raffle tickets (don’t know if she would 
want that public or not)
Edmund J. Medeiros Fund (it would be great if in some form we could publish 
the letter from Nancy & Judy Medeiros)
Give running tally of Father Bernard Marton? ($5,030)

VOLUNTEERS

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

ADMIN
Brian Mellor
Sue Mellor

APF RAFFLE
Bill Babcock
Tom Blackadar
Steve Bowler
Herb Connolly Acura, Framingham
David Dines
Keff Dolan
Rob Donaldson
Brian Doniger
Rob Drake
Tracey Estabrook
Glen Glater
Jill Graynor
Janelle Hamilton
Maggie Harling
Adam Hayes
Lew Hollerbach
David Isenberg
Rosalind Joffe
Arthur and Phyllis Kaplan
Laura Kesser
Paul Lynch
Kim Lytle
Harvey Mades
Ruth Mades
Jill McGaffigan
Brian Mellor
Debbie Mellor
Sue Mellor
Krista Milne
Joanne Minassian
Julia Montgomery
Charlie Namias
The Peabody-Kaplan Family
Lorraine Peabody
Greg Pelosi
Jill Renwick
Stephanie Sisto
Ru Sweeney
Mark Tavitian
Amanda Viciana
H. Daniel Way

CUT-A-THON
Amanda Arter
Becca
Briezy Bessell
Carly
Diane Carrara
Joy Franks
Pasquale Giovanni
Melody Gonzalez
Brian Hamilton
Janelle Hamilton
Johnny Higgins
Lori Holloran
Nancy Kaplan
Patrice LaFont
Michael Leite
Debbie Mellor
Sue Mellor
Mary Ann Nordwall
Anthony O’Shea
Anna Peabody
George Peabody
Katie Peabody
Orania Wolf

DIAGNOSIS BROCHURE
Elizabeth Dean-Clower
Robin Dolan
Molly Corbett
David Flannery
Dr. Maggie Harling
David Holzman
Cynthia King
Kelly McGowan
Dr. Lisa Paine
David Shute

FITSENSE SENSE OF PURPOSE PROGRAM
Tom Blackadar/Fitsense
Mike Ervolini
Billy Harless
Father Bernard Marton

NEWSLETTER
Shari Agatstein
Annemarie Armstrong
Savannah Bashaw
Maryann Boyle Murray
Bob Brown
Jeannie Connerney
Mike Ervolini
Nikki Lessin-Joseph
Frank Siteman
Hillary Stanton

OTHER
Rosalind Joffe (State by state membership drive)
Marion Leeds Carroll (Singing Benefit)
Jill McGaffigan (Financials)
Krista Milne (PR)
Leora Schiff (MS & Genetics Seminar)
Kevin Wood (Entelos Project)
Freda & Ralph Warrington (Fundraising Advice)
Erik Heels, Mike Fiore (Legal Services)

COMPANIES CONTRIBUTING GOODS OR SERVICES:
Acme Foods (Cuts for a Cure)
Backstage Café (Cuts for a Cure)
Clockwork Design Group, Inc. (design)
Echo Engineering (database construction)
The Ghent Studio of Fine Art (Cuts for a Cure)
Mail Perfect, Inc. (mailing services)
Yorgo's Bageldashery (Cuts for a Cure)