[bostoncure.org] Status since last reported on 6/17/03

[Art Mellor]

Boston Cure Project informal status since last reported on 6/17/03:

>>> Joining Us This Month

o Eric Hovde has joined our Board of Advisors. You can read his bio
  here:
  http://www.bostoncure.org/about/people.php?section=6&id=49

  And in a "small world" situation, we discovered that one of our
  contributors from Chicago whom Art met at the Race to Erase event in
  LA is Eric's brother-in-law! We had no idea.

>>> Cure Map

o The final draft versions of the study protocol and informed consent
  form arrived yesterday from Genomics Collaborative. We will
  circulate these to our advisors for a final once-over and send them
  off the Beth Israel to be formatted for presentation to their
  Institutional Review Board. Things are moving forward!

o The first draft of our participant questionnaire for the blood &
  tissue bank is also complete and currently being reviewed

o We had a good luncheon with one of our newest Scientific Advisory
  Board members, Vince Macaluso, and his family on their way back to
  New York from a speaking engagement in Maine. You can see Vince's
  bio here:
  http://www.bostoncure.org/about/people.php?section=4&id=46

o One of our volunteers, Sujit, is taking a crack at moving the Phase
  1 Toxic Agents document forward and has already made some good
  progress in the initial definition stage.

o We began the process of applying for our first NIH grants to help with
  the development of our blood & tissue bank. This promises to be a
  lengthy and educational process, but good for the future.

o Hollie contacted a group at the CDC that is doing a project similar
  to our blood & tissue bank -- they are collecting samples for
  genetic and environmental tests and are interested in discussing
  ways to collaborate.

>>> Fundraising

o We just sent out our July Written Appeal (we do 2 a year). You
  should be hearing from us shortly if we haven't heard from you in
  the past 9 months. You can always contribute on line at:
  http://www.bostoncure.org/about/contribute.php

  Many thanks to Brian Mellor, Sue Mellor, Amanda Rossi, and Lynn Vesey
  for their help in pulling this together.

o Melissa and Art attended the Association for Fundraising
  Professionals fundraising roundtable event, where we met some people
  who manage foundations in the local area. We have already met with
  one of the people to discuss applying to them.

o Upcoming Fundraising Events are listed below in the Events section

>>> Education

o The first complete draft of our brochure for the newly-diagnosed has
  been written; editing, graphic design and printing are next

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 Catalyst is a search engine optimization company has begun a project
  to help us boost our ratings in the search engines.

o Rosalind Joffe, a coach for people dealing with chronic diseases in
  the workplace (she has MS) and a volunteer, has contributed one of
  her documents for our web site called "7 Habits For Regaining Power
  in the Workplace With Chronic Illness":
  http://www.bostoncure.org/downloads/7-habits-chronic-illness.pdf

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.

>>> Community Building

o Art had a nice talk with Abbey Meyers, president of the National
  Organization of Rare Diseases

o Art and Melissa met with Audrey Gordon of Progeria Research
  Foundation, a similar grass roots effort who recently found the gene
  that causes their very rare disease (fewer than 100 world wide).

o Art talked to John Edicola regarding a Huntington's tissue
  collection they are launching in Rochester, NY. It was interesting
  to learn that they are finding all the same stumbling blocks we
  are. 

o We'll be holding an "MS Social" on Aug 4th - please check out this
  page for further details:
  http://www.bostoncure.org/events/eventpages/20030804_mssocial.php

o Art spent a day getting his photo taken for an upcoming article in
  Fortune Small Business magazine. It's currently slated for the
  October issue (released in September), we'll announce when it's
  really out. This should get us some much wanted national exposure.

o A few of our staff and volunteers spoke with Naomi Aoki at the
  Boston Globe about issues and perceptions surrounding
  direct-to-consumer marketing of MS pharmaceuticals. No date set for
  publication of this article.

o George Peabody continues to forge ahead on the Families with MS
  Project. We'll have more details as they become finalized.

o We spoke and emailed with the Entelos people again in our continued
  efforts to define a consortium to develop computer models of MS

o Rosalind Joffe will be spearheading an effort to help increase the
  number of people on our mailing list in a systematic, state-by-state,
  way.

o Linda Vesey has helped with the July Appeal and with collecting
  images for us to use in a "What is MS" presentation for use in
  talks about our organization.

>>> Events

o Cut-a-thon, July 27 in Norfolk, VA
   For a contribution of $20 per service, About Face
   Hair Design of Norfolk is offering 30 minute
   maniures, facials, haircuts, and massages.
   Appointments can be made by calling 757-624-3500.
   http://www.bostoncure.org/events/eventpages/20030727_cut_a_thon.php

o Raffle Drawing, August 20 - Arlington, MA.
   Raffle Tickets are still available.  Some lucky
   person will win a new car or $20,000 in cash.
   Contact melissa at bostoncure.org for more details.
   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 Golf Tournament, October 8 - Plymouth, MA
   Boston Cure Project will host a golf tournament
   at Pinehills Golf Club in Plymouth.  The event
   will run from 11am to 5pm.  Tickets are $300
   per person, $1200 per foursome.  Price includes
   meal, custom golf shirt, and a goody bag.  Prizes
   will be awarded and a hole in one will win you a
   new GMC truck. Details will be announced in the coming weeks.

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 Benefit Concert, October - Arlington, MA
   Volunteer, Marion Leeds Carroll, a member of the
   Longwood Opera here in Boston is organizing a
   benefit concert for the Boston Cure Project
   which will take place this October in Arlington.
   Stay tuned for more details.

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

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

ADVISOR
Ellen Frank
Marty Joyce

ANNA PEABODY FUND RAFFLE
Tom Blackadar
Steve Bowler
Herb Connolly Acura, Framingham
Keff Dolan
Rob Donaldson
Brian Doniger
Rob Drake
Glen Glater
Jill Graynor
Janelle Hamilton
Maggie Harling
Adam Hayes
David Isenberg
Arthur and Phyllis Kaplan
Laura Kesser
Paul Lynch
Kim Lytle
Harvey Mades
Ruth Mades
Brian Mellor
Debbie Mellor
Sue Mellor
Krista Milne
Joanne Minassian
Charlie Namias
The Peabody-Kaplan Family
Greg Pelosi
Jill Renwick
Stephanie Sisto
Ru Sweeney
Mark Tavitian
Amanda Viciana

NEWLY DIAGNOSED BROCHURE
Dr. Maggie Harling
Cynthia King
Dr. Lisa Paine

FUNDRAISING PROJECTS
Nancy Burstein (concert event)
Marion Leeds Carroll (concert event)
David Schreiber (concert event)
Janelle Hamilton/About Face Hair Design (Cuts for a Cure)
Arthur & Phyllis Kaplan (Cuts for a Cure)
Mark Halliday (Fundraising DVD idea)

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

JULY APPEAL
Brian Mellor
Sue Mellor
Amanda Rossi
Lynn Vesey

MS SOCIAL
Jen Downing
Stephanie Sisto
Alan Weinberg

NEWSLETTER
Shari Agatstein
Anne Marie Armstrong
Savannah Bashaw
Bob Brown
Jeannie Connerney
George Disario
Maryann Boyle Murray
Mike Ervolini
David Halliday
Nikki Lessin-Joseph
Krista Milne
Katie Peabody
Peter Schmidt
Frank Sisto
Stephanie Sisto
Frank Siteman
Hillary Stanton
Debby Wiesen

SCAVENGER HUNT WRAP UP
Ruth Mades
Debbie Mellor
Sue Mellor
Lisa Sargeant

OTHER
Krista Milne (PR)
Justin Polanik (clerical assistance)
Sujit Purkayastha (Cure Map investigation - Phase 1 Toxins)
Michael Silton (CME project)
Stephanie Sisto (MS research spending analysis)
Stan Vernon (grant writing)
Kevin Wood (Entelos project)
Russell Leblang (Legal)
Erik Heels (Legal)

COMPANIES CONTRIBUTING GOODS OR SERVICES:
Clockwork Design Group, Inc. (design)
Echo Engineering (database construction)
Mail Perfect, Inc. (mailing services)
-- 
...............................................................................
    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

     Even when the experts all agree, they may well be mistaken.
			 -- Bertrand Russell