[acp-status] status since last reported on 1/24/06

[Art Mellor]

Accelerated Cure Project informal status since last reported on 1/24/06:

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

>>> Joining/Leaving Us This Month

o Vicki Sato has been on our Board of Advisors for some months now,
  but we finally got a bio up:
  http://www.acceleratedcure.org/about/people.php?section=6&id=82

>>> Cure Map/Repository

Repository:

o Our goal has been to have the study "open for business" on March 15.
  So far we are making great progress toward that goal and expect to
  have our sites ready to enroll participants on that date or soon
  thereafter.

o One of our sites (the Shepherd Center in Atlanta) has been granted
  approval for the study from its IRB, the board that reviews studies
  to ensure that participants are protected.  The other sites are
  working toward IRB approval at their facilities.  We are also close
  to having approved budgets at all of the sites, and have scheduled
  webcast training sessions for the study personnel.

o Art and Hollie recently flew down to Atlanta to meet Ben Thrower,
  Issi Clesson, and other people at the Shepherd Center who will be
  involved in our study.  Issi gave us a tour of the facility so we
  could get a firsthand glimpse of the wonderful work they do there.

o We have finalized the case report form (the questionnaire) that
  participants in our study will complete.  Several other important
  documents and procedures are also complete now.

o We're busy working on a few remaining elements, such as the
  assortment of tubes that will go in the blood collection kit and the
  electronic form of the case report form.

o We are submitting a proposal to the National MS Society this week
  for financial support for the repository.  If approved, this would
  help significantly in funding the operation of this project.

Other scientific projects:

o The "Infections in MS" workshop we are helping to organize is really
  coming together, with many interesting speakers now on board.  This
  workshop is part of a conference on HHV-6 and will be held in
  Barcelona on May 3-4.  Details can be found at
  http://www.hhv-6conference.com/program/workshops.php
  and will also appear on our web site shortly.

o We will be showing a poster at the Massachusetts Biotech Council
  "Discovery Day" conference
  http://www.massbio.org/events/discovery_day/2006_agenda.php
  on March 8 in the Sheraton Copley Hotel in Boston.

o Hollie and Art visited the Centers for Disease Control while in
  Atlanta, and Hollie finally got to meet her HUGE review collaborator
  Dee Williamson.  We also met with one of Dee's colleagues, David
  Thurman, to talk about MS epidemiology.

o Art will be attending some of the FDA Tysabri Advisory Committee
  meeting in DC. We'll give a report on that after.

>>> Fundraising

o A very special thank you to volunteers Susan Pantalone, Bill Meyer,
  and Stephanie Sisto for coming in to help with our annual appeal
  mailing.  Over 3,600 letters went out to supporters last week to
  request continued funding of our work.  If you'd like to make a
  gift, look for your letter in the mail or make a gift on-line here:
  http://www.acceleratedcure.org/about/contribute.php

o If you would like to see more things happening in your community to
  support Accelerated Cure Project, check out our Expansion Team
  program.  We are looking for individuals willing to do
  letter-writing campaigns, run events, and set up a named funds:
  http://expansion.acceleratedcure.org/bcpanemone/supporters.asp

>>> Education

o There's a new poll up on MSNews:
  Where do you get the best emotional support for your MS?
  http://msnews.acceleratedcure.org/article.pl?sid=06/02/24/139218&mode=nested

o Melissa met with Martine Assaf to discuss distribution of our
  booklet "So You Have MS...What's Next?" to neurologists throughout
  New England, a project that is being made possible by the Kelly
  Packowski MS Foundation.

o We've put up an add-on to our "What's Next?" booklet - a Doctor
  Visit Form. Take a look, it's a good checklist to bring when you
  visit the doctor:
  http://www.acceleratedcure.org/downloads/doctor-visit-form.pdf

o A group of Harvard Business School students lead by Peter Bowen and
  aided by Randi Cohen are helping us look at what are all the
  services someone with MS might want access to and how do they find
  them.

o MSNews (http://msnews.acceleratedcure.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 a number of meetings with various people:
  - Art attended a "Biotech Tuesday" event and met many folks in the
    local biotech community
  - We are looking into how the repository could be used to help
    accelerate developments of treatments and have talked with folks
    at Serono and Peptimmune about this to get some ideas.
  - Art and Melissa attended the Kelly Packowski MS Foundation annual
    event.
  - Art spoke on a nonprofit panel at Bentley college and was
    interviewed by a Babson student about social entrepreneurism
  - Attended Core Connections support group meeting
  - Met volunteer Kate Mosley when we were down in Atlanta
  - Art attended local nonprofit networking group EMSI
  - Art was interviewed by the Korean Consulate on starting research
    based nonprofits
  - Melissa and Art met with folks from Epilepsy.com
  - Art and Hollie met with the Alzheimer's Forum folks to get a demo
    of a new system they are creating to organize research data in
    very useful ways.
  - Art and Melissa spoke with development staff at Johns Hopkins
    regarding the possibility of joint fundraising
  - Art and Melissa met with volunteer Ruth Thomsen to discuss a few 
    fundraising and awareness building activities she has been working
    on for us. 

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

>>> Events

o Art and Melissa attended the Kelly Packowski MS Foundation's Fourth
  Annual Wine Tasting and Auction on January 28th.  Plans are already
  underway for their Fifth Annual event, which will take place January
  27th, 2007 again in Boston, MA.

o Accelerated Cure Project will have a table at a Copaxone patient
  marketing seminar taking place Saturday, March 18th from 9am-12pm at
  the Sheraton Braintree Hotel, 37 Forbes Road, Braintree, MA.
  Featured speakers include Dr. Bharani Padmanabhan, Director of MS
  Services at Angels Neurological Centers and Field Injection Training
  Nurse, Karen D'Amico.  For more details and to RSVP, call
  1-800-887-8100.

o Accelerated Cure Project will have a team of eight people running on
  its behalf in the 110th Boston Marathon on Monday, April 17th.  For
  more details and to make a contribution in honor of any one of our
  amazing runners, visit:
  http://expansion.acceleratedcure.org/mar06/.

  Note: The Gerald Sweeney Family Foundation has graciously agreed to match 
  every contribution made to runner, Kirsten Cunningham up to $10,000!

o The Medeiros Family is holding its annual MS and Sports Scholarship
  fundraiser in Somerville, MA on Saturday, April 28th:
  http://www.acceleratedcure.org/events/eventpages/20060429_medeiros.php

o Our Fifth Annual Scavenger Hunt is taking place on Saturday, May
  20th at The Skellig in Waltham.  Scavenger Hunt registration opens
  on Wednesday March 1st. Save the date and start assembling your
  team:
  http://www.acceleratedcure.org/events/eventpages/20060520_hunt06.php

  Send mail to hunt06 at acceleratedcure.org if you'd like to be alerted
  when team registration opens.

o Lauren Smith is going to ride his bike from Chicago to Waltham to
  raise money to support our efforts. You can support him and read
  more about his efforts here:
  http://expansion.acceleratedcure.org/mspedal/



>>> Operations

o The Annual Report has been finalized and is available for download:
  http://www.acceleratedcure.org/about/annualreport.php
  Printed copies will be going out to people who contributed $250 or
  more, or by individual request. They will be available in the next
  several weeks.

  Huge thanks to Clockwork Design Group http://www.cdgi.com and
  Hornick Rivlin Studio http://www.hornickrivlin.com for all
  their fantastic work in putting this together!

o We've been preparing for our Audit. It's the trade-off for not
  paying taxes.

o We're going to be moving to a different floor in our building as
  soon as we work out the details of the lease. This will give us a
  bit more space.

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

January Contributed Goods and Services
Clockwork Design Group, Inc.
Matrix Media
Hornick Rivlin Studio

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