[acp-status] status since 08/17/05

[Art Mellor]

Accelerated Cure Project informal status since last reported on 08/17/05:

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

>>> Joining/Leaving Us This Month

o We're still the same old MS battlers we were last month

>>> Cure Map/Sample Repository

o Progress continues to be made on plans for the main effort of our MS
  sample and data repository.  We have selected our electronic data
  capture vendor and are in the final evaluation process for the
  contract research organization that will help us manage the study.
  We are also busy talking with MS clinics that may join us as
  collection sites.  Sara and Art went to Johns Hopkins recently to
  meet with Dr. Benjamin Greenberg to discuss their potential
  participation in our study.  Sara is also developing a business plan
  that covers our basic plans for funding and operation of the
  repository.

o We are working out the final details of sending samples collected
  during the pilot study to scientists.  We hope to have a successful
  conclusion soon with samples sent to a team studying viral
  involvement in MS.

o Hollie continues to work on the collaborative review of the HLA-DR15
  gene region with her colleagues from Duke and CDC.

o Art met with Gerry Sussman and Peter Szolovits at MIT to discuss
  possible future approaches to dealing with data generated from the
  use of the repository.

o Vicki Sato, former CEO of Vertex Pharmaceuticals and Advisory Board
  member, has been helping us formulate our fundraising pitch for the
  Repository to appeal to those in the scientific community.

o Our summer intern Anne Yu took her MCATs (we are sure she aced them)
  and is now finishing up her Phase 2 document on nutritional factors
  in MS.  Hollie is editing Stephanie Lee's Phase 2 document on toxic
  agents and learning a great deal about toxics and MS in the process.

o Art highly recommends reading the article "Can a Biologist Fix a Radio?"
  It clearly articulates the problem with current approaches in
  biological research and why an engineering approach is needed:
  http://www.acceleratedcure.org/downloads/Radio.Lazebnik.CCELL.2_3_179.115.pdf

>>> Fundraising

o Don't forget to RSVP for our Annual Event in Cambridge, MA on
  Saturday October 29 - it is free, but we ask you to bring a guest
  who would be interested in the organization:
  http://www.acceleratedcure.org/rsvp

>>> Education

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 and Art met with supporter and volunteer, Rosalind Joffe to
  discuss workplace coaching services for individuals with chronic
  illness, which she currently provides through her business:
  http://www.cicoach.com/

o Marla Madison of My Shoes (http://www.myshoes.org.uk) visited us in
  August.  We learned more about her efforts to raise money and
  awareness for MS in the UK via the women's fashion industry.

o Melissa and Art attended the Deutsche Bank Championship PGA
  tournament in Norton, MA on 8/31 as a result of recent corporate
  support from sponsor, Deutsche Bank.  Accelerated Cure Project was
  featured in a full-page color ad in the event's program booklet and
  awarded a monetary grant by Deutsche Bank.

o Art and Melissa met with David Hirschberg, Director of Development
  for the Franklin Park Zoo (http://www.zoonewengland.com/) to discuss
  fundraising ideas and strategies to support our Sample Repository
  program in 2006.

o Art went to Chicago and Milwaukee to meet with supporters. He met
  with folks from John Hancock and a number of other people who have
  been supporting us over the years.

o Brad Saul of Matrix Media has donated a considerable amount of radio
  advertising for us via his radio program syndication.

o Art met with Ben Heywood of Patients Like Me, a startup software
  company creating a mechanism for people with various diseases to
  track their progress and response to therapies and compare them to
  others. 

o Melissa and Art made a trip to the Washington D.C. area this week to
  visit local supporters and various members of the local MS
  community.  Some of the people we met included:

  - Kamilah Martin, Founder of the Martin MS Alliance Foundation 
    (http://www.kamilahmartin.com/)
  - Greg Simon, President, and Kristin Schneeman, Program Director, of 
    FasterCures (http://www.fastercures.org)
  - Karen Modell, Founder of the Montgomery MS Center 
    (http://www.montgomerymscenter.org/)
  - Bob Valdes of the Rockville Roadies MS Project (http://www.rrms.us/)

o Scientific Advisor Vince Macaluso sent us an amusing video of his
  daughter, Abby, putting on an Accelerated Cure Project t-shirt while
  hoola-hooping:
  http://www.acceleratedcure.org/events/tshirtpics/acp-t-abby.avi

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

>>> Events

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 Good luck to Anthony Russo of Milwaukee, WI who will be running in
  the Milwaukee Lakefront Marathon on October 2nd through the Sense of
  Purpose program to raise funds for Accelerated Cure Project.  If
  you're a runner and you'd like to use an upcoming race as a means of
  supporting our work, visit
  http://www.acceleratedcure.org/senseofpurpose/ for details.

o Spend a day in Vermont with Accelerated Cure Project for our first
  Walk!  Carrie's Walk, organized by supporter, Carrie Bryant, and her
  friends and family is a 7-kilometer (4.3 mile) walk through the
  picturesque campus of Middlebury College of Middlebury, VT
  benefiting Accelerated Cure Project and commemorating the 1-year
  anniversary of Carrie's MS diagnosis.  The Walk will take place rain
  or shine on Saturday, October 15th.  For more information, to
  register as a walker or to sponsor a walker, please visit
  http://www.acceleratedcure.org/carrie or contact Sarah Nels at
  781-487-0010.

o Volunteer Patricia Phelps is holding an informational seminar that
  we are presenting at in Ithaca, New York. Details here:
  http://www.acceleratedcure.org/events/eventpages/20051018_fingerlakes.php

o It's time for The Accelerated Cure Project Halloween Concert!
  Please join us on October 23rd 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 visit
  http://www.acceleratedcure.org/sing or 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/20051029_bcp_party.php
  or call Julie Morgenlender at 781-487-0008.

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.  The
  generous salon staff at About Face Hair Design and other area salons
  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.  The cost is $25 for each half hour haircut, manicure,
  pedicure, massage, OR facial.  To make an appointment, call a
  participating salon to book your appointment before they are all
  gone!
  http://www.acceleratedcure.org/events/eventpages/20051106_cuts_to_cure.php

o We have another expansion team!  Kemp Jaycox and The Greater
  Cincinnati Cure Project (GCCP) is organizing a wine tasting and
  silent auction as their first event.  More information coming soon!

o Thanks to Stephen Harrison and his team of 15 volunteers,
  Accelerated Cure Project will be hosting its first scavenger hunt in
  New York city on October 15th at Pianos Bar and Lounge in
  Manhattan's lower east side.  More information about team
  registration coming soon!

>>> Operations

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

Operations August-September Status:

* Dave Kaffine and Joan Coyne working on donor database
* Dave Baker upgrading server?
* We have ACP t-shirts available, including youth and toddler sizes.
* Send us your size and address and we'll send you one.  Then send us
* a picture of you wearing it.
* Events: Preparations for the Fifth Annual Accelerated Cure Party on
* Saturday, October 29 are under way.  The event, which will take
* place at the MIT Faculty Club, will feature guest speakers, a silent
* auction, and more.  See details and RSVP at
* http://www.acceleratedcure.org/events/eventpages/20051029_bcp_party.php.
* Volunteers are needed for short (a few hours) tasks both before and
* during the event.  Contact Julie at julie at acceleratedcure.org,
* 781-487-0008 for more information.
* The Fall 2005 newsletter will be available in the downloads section
* of our web site early next week.  Paper versions will be mailed out
* in early October.

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

August 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
Catherine Doucette
Stephanie Sisto

Carrie's Walk to Cure MS
Carrie Bryant
Emily Nelson
Kate Bachman
Kevin Tierney
Sarah McCague

Cuts to Cure MS
Janelle Hamilton
Charlotte Urrutia
Dean Claud
John Getz
Patrice Kainrath

Dine to Cure MS
Greg and Carol Spicer

Donor Database
Dave Kaffine

Fundraising
Pat Phelps

New York Cure Project Hunt to Cure MS
Jessica Zall
John Viggiano
Kim McGeever
Megan Brown
Nadia Hile
Stephen Harrison

Neuroanatomy Paper
Jennifer Tobin

Newsletter
Dr. Michael Racke

Repository Business Plan
Peter Schmidt

Sing to Cure MS
Catherine Doucette
Debi Robinson
Marion Leeds Carroll
Nancy Costello
Ruth Seidman

Tee Off to Cure MS
Bill Meyer
Jacqui McCoy
Jayne Casey


Contributed Goods and Services
Clockwork Design Group, Inc.
Skelmir, LLC

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