[bostoncure.org] Status since last reported on 04/20/04

[Art Mellor]

Boston Cure Project informal status since last reported on 04/20/04:

>>> Joining/Leaving Us This Month

o After our trips to SF and DC we have a number of people lined up to
  join our Scientific and Pharma Advisory Boards. More on this next
  month when we get bios.

>>> Cure Map

o Art and Hollie attended the annual meeting of the AAN (American
  Academy of Neurology), held in San Francisco.  In addition to
  hearing the latest news on the MS research front, they also got to
  touch base with several of BCP's scientific advisors and make some
  new connections as well.  Their notes from the meeting can be found
  at:
  http://www.bostoncure.org:8080/article.pl?sid=04/05/07/1133206&mode=nested

o Hollie attended a conference on tissue banking sponsored by PRIM&R
  (Public Responsibility in Medicine & Research).  Much of it had to
  do with regulatory issues (such as confidentiality and consent), but
  there were also interesting case studies and "war stories" from
  people who are currently operating banks.

o Thanks to MIT's excellent UPOP (Undergraduate Practice Opportunities
  Program), we have hired two MIT students to intern with us this
  summer.  Irene Rahman and Brian Keegan will help us with the
  remaining Phase 1 components of the Cure Map (nutrition, toxic
  agents, and/or trauma).

o We are in the protracted process of getting a contract from the Beth
  Israel to begin our tissue bank collection. We also met with Peter
  Riskind and Roberta Beyrouty at UMass to talk about next steps
  getting a collection going there also.

>>> Fundraising

o Congratulations to Ashley Brody who ran the Boston Marathon on April
  19 and leveraged this effort to raise money for the Boston Cure
  Project through our Sense of Purpose program.

o Thank you to the Boston Volleyball Association the All American
  Girls volleyball team, both of which held tournaments to benefit the
  Boston Cure Project this past month.

o Andy Monk is more than halfway through his 1000-mile walk from
  England to Germany along the route his father took during in World
  War II, an effort he has undertaken to raise money for MS research,
  a portion of which will benefit the Boston Cure Project.  To support
  Andy, learn more, or follow his progress through England, Belgium,
  Holland, and Germany, visit www.burylancs.co.uk.

o Melissa and advisor, Dr. Manuel Lipson, attended the Boston
  Foundation's annual reception and Legislative Update, featuring John
  Edie, which was held at the Institute of Contemporary Art.

o Personal letter writing campaigns have been remarkably successful for us in 
  the past few months, generating more than $31K so far in 2004 alone.

o Boston Cure Project has launched its Expansion Team program through
  which Boston Cure Project supporters may create family or regional
  funds (in the name of a specific person, family or region) to
  benefit the Boston Cure Project.  Contact Melissa O'Shea for more
  details: 781-788-0227

>>> 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

o We're beginning work on our next newsletter. We need volunteers:

  We are looking for volunteers to help with production.  We need
  writers and proofreaders to help with this job.  The time
  requirements vary, but are generally only a few hours total.  If
  interested, please contact Julie at 781-487-0008 or email
  julie at bostoncure.org.

o Art gave the Boston Cure Project view on what the past year of MS
  research has resulted in to Jennifer Huget of the Washington
  Post. The article will be posted at http://msnews.bostoncure.org
  when it becomes available.

o We met with quite a few people on our trips to San Francisco and
  Washington, D.C:

  - Scott Johnson & Rusty Bromley of the Myeling Repair Foundation
  - Numerous MS Researchers at the AAN meeting (see above)
  - Contributors Janice & Ray Altman, Ginny Mahoney, and Susan & Dennis Jones
  - Amanda Kupferman at the Society for Neuroscience
  - Board of Advisors member Eric Hovde
  - Augusto Odone of the Myelin Project
  - Peter Calabresi of Johns Hopkins
  - Sharon Terry of PXE International and the Genetic Alliance
  - Scientific Advisors Steve Jacobson, John Alam, and Peter Riskind
  - NIH/NINDS Director Story Landis

o Our brochure for people newly diagnosed with MS has been through its
  first round of graphic design and looks really good (thanks,
  Clockwork Design Group!).

o A few more T-shirt pictures are available:
  http://www.bostoncure.org/events/tshirt.php

>>> Events

o The Hunt to Cure MS Scavenger Hunt is taking place THIS SATURDAY at
  the Skellig in Waltham.  It's not too late to sign up to participate
  in the hunt or you can simply join us for the awards party taking
  place from 5 to 8pm.  For more details contact Lisa Sargeant:(508)
  879-2994, lisa at bostoncure.org or visit http://www.bostoncure.org/hunt

o The Tee Off to Cure MS Golf Tournament taking place at Charter Oak
  Country Club in Hudson, MA on Monday, July 12 at noon.  Visit
  http://www.bostoncure.org/events/eventpages/20040712_golftourney.php
  for more details.  If you're not a golfer perhaps you'd consider
  purchasing a spot for someone who is...Father's Day is fast
  approaching!

o Art and Melissa attended the 2nd Annual Edmund J. Medeiros
  Foundation fundraiser in Somerville, an event held to raise money
  for Somerville High School athletic scholarships and for the Boston
  Cure Project.

o Boston Cure Project was invited to participate in the Boston Ski and
  Sports Club's Cinco de Mayo Party at the Rack earlier this month, an
  event that raised awareness for our organization and allowed us to
  recruit participants for our Scavenger Hunt.

o The Boston Cure Project had a table at Teva Neuroscience's patient 
  marketing seminar last month featuring country music star, Clay Walker.

o Rosalind Joffe, one of our volunteers (www.CIcoach.com), is offering
  2 Tele Programs in June for people who live with MS.  A Free
  TeleSeminar (June 4, noon-12:30 est) focuses on 3 key aspects of
  talking about your illness at work.  The Coaching Combo, priced at
  $150, includes 2 coaching sessions and a TeleWorkshop (June 9,
  6-6:30pm est).  It focuses on restructuring your negative thoughts
  to be more positive so you can be more successful managing your work
  and your health.

o Our 3rd MS Social has been scheduled! It's June 6th at 6pm at "News"
  in downton Boston. Details are here:
  http://www.bostoncure.org/events/eventpages/20040610_mssocial.php

>>> Operations

o As previously mentioned, we have moved to a new location on the
  other side of Waltham. We are now located at:
  300 Fifth Avenue, Waltham, MA 02451 781-487-0008
  http://www.bostoncure.org/common/directions.php

o Evan from Nobles High School has been coming in and helping us with
  administrative tasks.

o Joan Coyne & Dave Kaffine continue to make progress on developing
  a new database for tracking our contributions and supporter lists.

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

2004 Cuts for a Cure:
Janelle Hamilton

Administrative Assistance:
Sue Mellor
Evan

Marketing Advice:
Gabe D'Anunzio

Analysis of research spending dollars for MS organizations:
Stephanie Sisto

BCP Concert:
Marion Carroll

Donor Database Project:
David Kaffine
Joan Coyne

Fundraising:
George Peabody & Nancy Kaplan

Golf 2004:
Deborah Kearney
Jacqui McCoy
Mark Aher

Letter Writing Campaign:
Freda Warrington

BCP Office Move:
Ray Desautels
Lisa Sargeant
Debbie Mellor
Anthony O'Shea
Leslie Kenney
Alex Collingridge
Michael Haag

Neurology Newsletter:
Jennifer Frashure

Scavenger Hunt 2004:
Lisa Sargeant
Belinda Vandervoot
Amanda Song
Sabrina Sequeira
Debbie Mellor
Sue Mellor
Kellie Trainor
Joanne Minassian
Kathleen Chanliau
Marcy Kelly
Stephanie Wilson
Jennifer Tobin
Jackie Desmarais
Dave Dussault
Douglas J. DeAngelis
Bill Meyer
Teresa McFarland
Mary Dyer
Nancy Medeiros
Pam Clasby
Alia Rieker
Elizabeth Dean-Clower
Sherry Reynolds
Erika Sanders
Kristina McHale
Michele McHugh
Nancy Costello
Stephanie Sisto
Steve Bowler
Susan Rowe
Karen Kivisto
Pete Mellor
Tracey Leary
Rosemary Brutico
Ginny Soybel

Donated Services:
Clock Tower Law Group

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