[acp-status] since last reported on 06/14/05

[Art Mellor]

Accelerated Cure Project informal status since last reported on 06/14/05:

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

We had a VERY busy month since the last update!

>>> Joining/Leaving Us This Month

o Our new Repository Director, Sara Loud, joined us on June 20 and is
  already making great progress in getting us ready to expand our
  collection effort. You can read her bio here:
  http://www.acceleratedcure.org/about/people.php?section=2&id=74

o We are also pleased to welcome the new Study Coordinator at UMass
  Memorial who will be working on our pilot study - Kathleen O'Leary. 

>>> Cure Map/Sample Repository

o Currently we are in the process of interviewing contract research
  organizations, updating our study documents, and building a budget
  model.  Another major priority is the formal documentation of the
  repository processes and procedures.  In addition to the expanded
  study, Sara has also taken over coordination of the pilot study.
  Welcome aboard, Sara!

o The pilot collection has made steady progress, with both sites (Beth
  Israel Deaconess in Boston and UMass Memorial in Worcester)
  enrolling new participants.  So far 34 people have contributed
  samples. As soon as we finalize our Material Transfer Agreement
  (with the help of Lee Crews) we will distribute our first samples to
  a researcher.

o Art, Melissa and Hollie met with the newest member of our
  pharmaceutical advisory board, Maria Lopez-Bresnahan, who is the
  Senior Medical Director in Neurology Clinical Development at Serono,
  Inc.  We look forward to working with her! You can read her bio
  here:
  http://www.acceleratedcure.org/about/people.php?section=5&id=73

o Hollie updated the Phase 2 genetics spreadsheet with studies
  performed over the past year.  A total of 281 genes or gene regions
  have been examined in MS case-control studies.  The spreadsheet also
  contains the results of genome-wide screens and has a list of MS gene
  expression profile studies.  You can download it at:
  http://www.acceleratedcure.org/downloads/phase2-genetic-studies.xls

o Art and Hollie talked with the Foundation for the NIH, a nonprofit
  that helps find funding for NIH projects.  We have identified an
  opportunity to collaborate with them and the NIH around our sample
  repository and will be meeting soon to talk about it in-depth.

o Hollie is finishing up the first major piece of the pathogens Phase 2 
  effort and plans to have it reviewed and posted soon.

o Our summer interns Anne and Stephanie are making excellent headway on 
  their Phase 2 nutrition and toxic agents projects.

>>> Fundraising

o Thanks to volunteers, Sue Mellor, Cindy Elia, Stephanie Sisto, Jane
  Shapiro, and Catherine Doucette for coming in to help us with our
  July appeal mailing.  Over 2,000 letters will be going out to our
  supporters this week to request continued funding of our work.  If
  you'd like to make a gift, look for your letter in the mail or visit
  our web site for details:
  http://www.acceleratedcure.org/about/contribute.php

o If you like our work and 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 Arthur Rathjen reviewed the book: Gold Coast Cure
  http://www.acceleratedcure.org/msresources/library.php#bookreviews

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. 

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 Melissa, Sarah, Sara, and Art attended a patient marketing seminar
  hosted by Biogen at the Boston Museum of Science where they met with
  scientific advisor, Dr. Vincent Macaluso, who was speaking at the
  event.

o Melissa and Sarah attended a reception honoring the opening of John
  Hancock's new headquarters building in Boston at which they met
  Mayor Tom Menino and had a chance to personally tell him about our
  work.

o Melissa and Sarah met with Michael and Laura Green to begin planning
  of the 2006 event "Sing to Cure MS jr", a kids only spin-off of the
  annual Sing to Cure MS concert.

o Art, Hollie, and Melissa spent a week in NYC meeting with volunteers, 
  scientific advisors, and contributors throughout the area.  They attended 
  15 meetings as well as the New York Cure Project kick-off 
  fundraiser.  Highlights from the week included...

  A meeting with Matt Blumberg, CEO of Return Path
  (http://www.returnpath.net/), which has made Accelerated Cure
  Project its pet charity and will be donating free services and
  proceeds from a recent book publication.

  A meeting with Eric Yaverbaum, President of PR firm Jericho
  Communications who recently launched the "Walk a Mile in My Shoes"
  campaign (http://www.jerichopr.com/releases/jericho8.htm) to promote
  stem cell research.

  A meeting with scientific advisor, Dr. Saud Sadiq, who shared his
  vision and plans for the opening of his new MS clinic in Manhattan.

  A meeting with Cheryl McCourtie of the Montel Williams MS Foundation.

  Dinner with scientific advisor, Dr. Vincent Macaluso, and his family at his 
  home in Queens.

  Met with numerous supporters to thank them for their help and
  discuss future plans.

o We had a number of other meetings and phone calls:
  - Melissa, Sarah, and Art met with Jonathan Katz re: possible fundraiser
  - Art and Melissa met with volunteers, Bill Meyer and Ruth Thomsen
  - Art met with Bill Anderson from Biogen re: Tysabri status
  - Touched base with Scientific Advisory Board Member Allitia Dibernardo
  - Melissa and Art went to dinner with Sean O'Shea and Carol Rose to
    thank them for their support

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

>>> Events

o Accelerated Cure Project is excited to announce its third annual
  "Tee-Off to Cure MS" Golf Tournament, scheduled for Monday,
  September 26, 2005 at Charter Oak Country Club in Hudson,
  Massachusetts.  The cost to participate is $400 per person or $1500
  per foursome. For more information, visit our website
  http://www.acceleratedcure.org/events/eventpages/20050926_golftourney.php
  or call Sarah at 781-487-0010.

o Save the date for the Accelerated Cure Project's Annual Party which
  has been scheduled for Saturday evening, October 29. Speakers will
  include Scott Johnson of the Myelin Repair Foundation and Augusto
  Odone of the Myelin Project.
  http://www.bostoncure.org/events/eventpages/20051029_bcp_party.php

o Volunteers, Christie Jones of Wappingers Falls, NY and Gigi Bailey &
  Curtis Berlinguette of Somerville, MA both hosted house parties on
  behalf of Accelerated Cure Project's new "Dine to Cure MS"
  initiative.  If you'd like to host a dinner party to raise money and
  awareness for Accelerated Cure Project, contact Sarah at
  781-487-0010 or sarah at acceleratedcure.org.

o The New York Cure Project, a volunteer driven expansion team of
  Accelerated Cure Project, held their Kick off Party on July 12th at
  The Juniper Suite in midtown Manhattan.  Over 120 people attended
  the 2 hour event, which included open bar, a silent auction, and a
  raffle.  The New York Cure Project's event raised over $6,000 to
  benefit the Accelerated Cure Project.  Pictures of the event are on
  the website
  http://www.acceleratedcure.org/events/eventpages/20050712_newyorkcure.php

o Carrie Bryant and her team of volunteers from Middlebury College are
  planning a 10-mile walk through Middlebury, VT on Saturday, October
  15 to benefit Accelerated Cure Project.  More information coming
  soon!  If you are interested in participating or receiving more
  information about the event, contact Sarah at 781-487-0010 or
  sarah at acceleratedcure.org.

o Join Accelerated Cure Project and About Face Hair Design for the
  third annual "Cuts to Cure MS" salon-a-thon on Sunday, November 6 in
  Norfolk, VA.  The generous salon staff at About Face Hair Design
  will once again donate their time and energy to work for free on
  this day so that your payment can be donated in full to the Anna
  Peabody Fund of the Accelerated Cure Project.  The cost is $25 for
  each half hour haircut, manicure, pedicure, massage, OR facial. To
  make an appointment, call About Face Hair Design 757-624-3500.

>>> Operations

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 The Summer 2005 newsletter has come out.  It should be arriving at
  doorsteps in mid-late July and is available online at:
  http://www.acceleratedcure.org/downloads/

o Dave Kaffine and Joan Coyne have made significant improvements to our
  donor database, adding the beginnings of a web front end.

o Dave Baker and Dave Burrage have mostly completed our big server
  upgrade. We still have a few things to tweak, but we are up and
  running even faster than before.

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

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

Administrative Assistant
Susan Mellor

Cuts to Cure MS
Janelle Hamilton
Dean Claude

Dine to Cure MS
Christie Jones
Gigi Baily

Donor Database Project
Dave Kaffine

Fundraising
Bill Meyer

Golf Tournament
Jayne Casey
Jacqui McCoy

Letter Writing Campaign
Pat Phelps

Low County MS Tour
Terri Bleam

Marketing
Mary Emsheimer

Middlebury, VT Walk
Carrie Bryant
Emily Nelson
Kevin Tierney

New York Cure Project Kick-Off Party
Philip Luongo
Jennifer Paretta
Stacy Schwartz
Dana Schwartz

Sing to Cure MS
Marion Leeds Carroll

Sing to Cure MS Jr.
Laura Green
Michael Green

Contributed Goods and Services
Clockwork Design Group, Inc.
Mail Perfect, Inc.
John Hancock LTC
24/7 Real Media
Graphic Technology, Inc.
Entertainment Weekly
Lewis Ranieri and Borghese Vineyards
Tony Smith
The New York Yankees
Richard Tsao

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