[acp-status] status since last reported on 07/19/05

[Art Mellor]

Accelerated Cure Project informal status since last reported on 07/19/05:

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

Dear Status List Recipients,

We have a lot to report this month. We will also be sending out a
message to our much larger Announce list this week. It will contain a
lot of overlap, and we generally try to space the mailings out, but
this week we have both to send so don't worry if you see some of this
information two times.

>>> Joining/Leaving Us This Month

o Our Summer Intern Stephanie has completed her stay with us and is
  back to MIT to continue her edu-macation.

o Eric Yaverbaum (of "Walk a mile in My Shoes" fame) has joined our
  Board of Advisors and has already helped us get some air time on
  Regional Network News in the New York area. You can read his bio
  here:
  http://www.acceleratedcure.org/about/people.php?section=6&id=75

>>> Cure Map/Sample Repository

o The pilot phase of our MS sample and data repository is going
  smoothly.  We now have samples from 39 individual subjects (these
  include MS subjects and controls) with accompanying questionnaires
  for most of them (some still being reviewed).  We have also sent
  contractual paperwork to two scientists who are interested in using
  these samples to investigate the causes of MS.

o We continue to make progress toward launching our main repository
  effort, where we will be collecting samples from 1,000+ subjects at
  multiple centers nationwide.  Sara is conducting due diligence
  interviews on the contract research organizations (CROs) we have
  under consideration to help manage the project, and is setting up
  meetings with electronic data capture (EDC) vendors who may be able
  to help us enter questionnaire data directly via computer.

  She is also making several needed revisions to the study documents
  so that we can initiate the ethics approval process at collection
  sites.  We have begun discussions with new collection sites and hope
  to have one or two signed up soon.  We are also gathering additional
  input from scientists about the types and quantities of samples they
  use in their MS experiments; this will be helpful in finalizing our
  collection kit and procedures.

o Art, Hollie and Sara traveled to Maryland to meet with
  representatives from the NINDS (National Institute of Neurological
  Disorders and Stroke) and the Foundation for the NIH.  The NINDS is
  setting up genetics repositories for a number of other neurological
  diseases (stroke, Parkinson's, epilepsy and ALS) so our goal was to
  identify opportunities to collaborate around our MS repository.  We
  discussed some preliminary actions to take now -- for instance, they
  will publicize our repository on their web site -- and brainstormed
  a number of other ideas.

o Hollie and Art attended a meeting for disease-focused nonprofits
  organized by FasterCures.org, an "action tank" formed to speed up
  development of treatments for all types of diseases.  The group
  decided to work on a number of cooperative efforts, including one
  that we proposed involving standardization of data collection for
  studies and repositories.  We are pleased to have the opportunity to
  join forces with other organizations who have goals similar to ours.

o Art, Hollie and Sara met with Jon Wilbanks of Science Commons, an
  organization that promotes openness and sharing of scientific
  resources by making available standardized, voluntary private
  agreements.  We support the goals of this organization and offered
  our help to Jon. http://science.creativecommons.org/

o Our summer intern Stephanie Lee finished her first draft of the
  Toxics Phase 2 document; Hollie is now editing it and will be
  sending it out for review.  An index of the studies Stephanie found
  in her research can be found on our web site, either in PDF format:
  http://www.bostoncure.org/downloads/phase2-toxicagents-studies.pdf
  or as an Excel spreadsheet:
  http://www.bostoncure.org/downloads/phase2-toxicagents-studies.xls

o Our other intern Anne Yu is taking a few weeks off to study for the
  MCATs (good luck, Anne!) but will come back soon to finish her Phase
  2 work on Nutrition.

o Hollie has recently been looking at the evidence for/against various
  pathogens as triggers of MS, and completed her initial analysis of
  this topic which is now being reviewed by one of our scientific
  advisors.

o We've been talking to the folks at http://www.alzgene.org about what
  it would take to add our MS Genetic analysis to their on-line web
  database of Alzheimer studies. 

>>> Fundraising

o Volunteers Ruth Thomsen and Bill Meyer continue to work with Melissa
  to help with our fundraising effort.

o Over 2,000 letters were sent out for our July appeal campaign.
  Thanks to everyone who has generously responded with a gift.  For
  those of you still wishing to make an annual donation, visit:
  http://www.acceleratedcure.org/about/contribute.php

o A special thank you to Mary Emsheimer and the marketing team at John
  Hancock for putting together a new Accelerated Cure Project pamphlet
  on our behalf.  Look for these new pamphlets at upcoming events or
  request a bundle (melissa at acceleratedcure.org) for handing out at
  your own gatherings and support groups.

>>> Education

o We are planning to professionally print our booklet for the newly
  diagnosed, "So, You Have Multiple Sclerosis ... What's Next?", which
  currently only exists on-line as a PDF.  We are in the process of
  making needed updates and revisions so it can be sent off to be
  formatted and printed.  We plan to make these available for
  neurologists or other doctors diagnosing MS to give out to their
  patients.

o Volunteer Scott Feier is helping us create a detailed listing of all
  MS drug targets known to be in the works at various pharmaceutical
  companies. 

o High school volunteer, Tory Bresnahan, is helping work on a
  presentation to explain MS to people unfamiliar with the disease. 
  This presentation will be used as part of a larger effort being
  pulled together by Joan O'Connell to teach people about MS and the
  Accelerated Cure Project.

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 other meetings and phone calls:
  - We continue to meet/talk with John Hancock folks as they help us out
  - Art met with Julie Totten of Families for Depression Awareness to
    discuss nonprofit management issues.
  - Art met with Leslie Kussmann at Aquarius Productions, the makers
    of health-related videos to discuss a project on MS she is working on
  - Art met with John Guandolo of Destination Cure in DC
  - Art, Sarah, and Melissa have been talking to Pat Phelps about a
    visit to Ithaca, NY to spread the word to her support group.

o Deutsche Bank US has contributed a full-page color ad for their
  program booklet at the PGA Tour they sponsor.

o Art was quoted on the front page of the Boston Globe in an article
  on Tysabri:
  http://tinyurl.com/8lbp9

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

>>> Events

o A big thanks to Watauga, North Carolina Girl's Basketball Team and
  their Coach, Todd Dixon, for hosting a free throw shoot-out which
  raised $2500 for Accelerated Cure Project.
  http://www.wataugademocrat.com/2005/0613web/shootingforagoodcause.php3

o Join us for the third annual Tee Off to Cure MS golf tournament
  taking place, Monday, September 26th at Charter Oak Country Club in
  Hudson, MA.  For details and registration information visit
  http://www.acceleratedcure.org/events/eventpages/20050926_golftourney.php

o The New York Cure Project's next endeavor is a New York City based
  Scavenger Hunt.  Stephen Harrison and his team of 15 volunteers are
  currently planning the Hunt, scheduled for Saturday, October 15 at
  Pianos Bar and Lounge in Manhattan's lower east side.  More
  information about team registration coming soon!

o Spend a day in Vermont Accelerated Cure Project for our first Walk!
  Carrie Bryant and her friends are organizing a 7-kilometer (4.3
  mile) walk through the Middlebury campus and the picturesque town of
  Middlebury, Vermont to benefit Accelerated Cure Project and
  commemorate the 1-year anniversary of her diagnosis.  The Walk will
  take place rain or shine on Saturday, October 15.  For more
  information, to register as a walker or to sponsor a walker, please
  contact Sarah Nels at 781-487-0010.

o It's time for The Accelerated Cure Project Halloween Concert!
  Please join us on Sunday, October 23 from 3-5pm at the Pleasant
  Street Congregational Church in Arlington, MA for the Third Annual
  Sing to Cure MS Halloween Concert The theme is "MS and Other Scary
  Things," and our performers plan an afternoon of great ghost
  stories.  For more information, please contact Sarah Nels at
  781-487-0010.

o Accelerated Cure Project's fifth annual Accelerated Cure Party is
  taking place on Saturday, October 29th at the MIT Faculty Club in
  Cambridge, MA.  The event is free, thanks to our generous sponsors,
  so that you may come hear guest speakers, Scott Johnson of the
  Myelin Repair Foundation and Augusto Odone of the Myelin Project, as
  well as Art Mellor and Peter Riskind speak about the status of
  current efforts to cure MS.  To RSVP or learn more visit
  http://www.acceleratedcure.org/events/eventpages/20050926_golftourney.php

o Those of you in the Hampton Roads area of VA should make note on
  your calendars about the third annual Cuts to Cure MS salon-a-thon
  taking place on Sunday, November 6 at a salon near you.  Don't miss
  this opportunity to get beautiful for the Thanksgiving holidays.
  Call a participating salon to book your appointment before they are
  all gone:
  http://www.acceleratedcure.org/events/eventpages/20051106_cuts_to_cure.php

>>> Operations

o Dave Kaffine and Joan Coyne are continuing their work on the donor database

o We have ACP t-shirts available, including kid's sizes.  Send us your
  size and address and we'll send you one.  Then send us a picture of
  you wearing it.

o Melissa and her husband, Anthony, hosted a wonderful BBQ at her
  house as our annual Staff/Board gathering.

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

July Volunteers reporting hours
(if we missed you, let us know - we'll add you next time!)

Administrative Assistant
Susan Mellor

Accelerated Cure Party for MS
Debbie Mellor
Charlie Namias

Admin
Brian Mellor
Cindy Elia
Jane Shapiro

Book Reviews
Art Rathjen

Cure Map
Joel Baron

Cuts to Cure MS
Janelle Hamilton
Dean Claud
John Getz
Patricia Kainrath
Charlotte Urutia

Dine to Cure MS
Christie Jones
Gigi Baily

Donor Database Project
Dave Kaffine

Fundraising
Bill Meyer
Ruth Thomsen

Golf Tournament
Jayne Casey
Jacqui McCoy
Cindy Elia
Bill Meyer

Letter Writing Campaign
Pat Phelps

Low County MS Tour
Terri Bleam

Marketing
Cindy Elia
Mary Emsheimer
Marva Lebrun

Middlebury, VT Walk
Carrie Bryan
Kate Bachmant
Emily Nelson
Kevin Tierney

MRI Economics Paper
Rob Lester

Neuroanatomy Paper
Jennifer Tobin

New York Cure Project Kick-Off Party
Philip Luongo
Jennifer Paretta
Stacy Schwartz
Dana Schwartz
Asha Mellor
Gary Plotkin
Meg Smith

New York Cure Project Scavenger Hunt
Corinne Cerny
Jessica Zall
John Viggiano
Kim McGeever
Kiya Bajpai
Megan Brown
Nadia Hile
Stephen Harrison

Personal Appeal
Pat Phelps

Pharmaceutical Stock Webpage Creation
Scott Tamosunas

Pharma Database
Scott Feier

Sing to Cure MS
Marion Leeds Carroll

Sing to Cure MS Jr.
Laura Green
Michael Green

Volunteer Intro Document
Peter Schmidt

Contributed Goods and Services
Clockwork Design Group, Inc.
Mail Perfect, Inc.
John Hancock LTC
24/7 Real Media
Ben & Jerry's
Borghese Vineyards
Debbie Baker
Entertainment Weekly
Graphic Technology, Inc.
Juniper Suites
New York Yankees
Richard Tsao
Tony Smith
Professional Staffing Group

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