[acp-status] status since last reported on 09/15/05

[Art Mellor]

Accelerated Cure Project informal status since last reported on 09/15/05:

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

>>> Joining/Leaving Us This Month

o No additions or deletions this month

>>> Cure Map/Sample Repository

o Repository pilot study:
  - The latest figures from the pilot study show that we have collected 
    samples from 39 subjects and complete data from 29 subjects.
  - Earlier this year we received a request from the Oklahoma Medical
    Research Foundation for serum samples from our repository for use
    in investigating viral triggers of MS.  We approved their request
    and have negotiated the agreement that spells out the terms of
    sample shipment and use.  The samples and associated data will be
    sent very soon.

o Repository main study:
  - Hollie and Sara flew to Dallas to meet with Elliot Frohman and Gina 
    Remington at University of Texas Southwestern to discuss the main study 
    and their potential participation in it.
  - After conducting a competitive bid process, we have selected 
    Omnicare, a contract research organization (CRO), to help us manage the 
    activities of the main study.  We are looking forward to finalizing the 
    contract and working with Omnicare to expand our repository.

o Sara attended a five-day seminar held by Boston University on Clinical 
  Research Trial management and found it very worthwhile.

o Sara has been busy corresponding with other organizations based in the 
  US and abroad to learn about their repository operations and best practices.

o Sara represented Accelerated Cure Project at a workshop organized by 
  Science Commons, a nonprofit that is working toward increased sharing of 
  information and resources in science.

o Hollie and Art flew to Thessaloniki, Greece, to attend the 
  ECTRIMS/ACTRIMS conference (European/Americas Committee for Treatment 
  and Research in Multiple Sclerosis).  You can read their write-up of the 
  conference here:
  http://msnews.acceleratedcure.org/article.pl?sid=05/10/05/1259204&mode=nested

o Our summer intern Anne Yu finished writing her analysis of the role
  of nutritional factors in triggering MS and has returned to school.
  Hollie is editing this Phase 2 document as well as the document on
  toxic factors and expects to have these posted soon.

o Hollie is helping the HHV-6 Foundation to plan a workshop for spring 
  2006 on the involvement of pathogens in MS.

o Art is still sitting on the Beth Israel Institutional Review
  Board and participating in the Weiner Natural History study.

>>> 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

o Over 1.2 million people worldwide received information about the
  Accelerated Cure Project last month thanks to corporate sponsor,
  Return Path (http://www.returnpath.net/) who did this mass mailing
  for us free of charge and to individuals who specifically had
  requested to receive information relative to what we do. More than
  600 people signed up for our mailing list as a result so far!

>>> Education

o We created a web page listing the resources we have to offer on our
  site: 
  http://www.acceleratedcure.org/offerings/

o Volunteer Holly Sivec has taken over the Book Review project so we
  should be able to start posting some more book reviews soon.

o We have a new poll up on MSNews: What's your most annoying MS symptom?
  http://msnews.acceleratedcure.org/pollBooth.pl?qid=10

o We're reviewing near-final versions of the neuro-anatomy paper by
  Jen Tobin

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 Art and Melissa traveled to Ithaca, NY this week to meet with local
  supporters and community members affected by MS.  Thanks to
  volunteer, Pat Phelps, we had five meetings, were interviewed live
  on a.m. radio, and hosted an evening seminar for 30 people at which
  Art spoke.  Our visit also prompted a local newspaper article about
  us the week prior to our arrival.  The article was in the Ithaca
  Journal and can be viewed here:
  http://www.ithacajournal.com/apps/pbcs.dll/article?AID=/20051015/NEWS01/510150332/1002

o Melissa attended an MS Health Fair hosted by Health New England and
  Berlex in West Springfield this past weekend and met with members
  of the Springfield community affected by MS.

o Art and Sarah attended a Biogen Idec event at which Art presented
  the Accelerated Cure Project's mission.

o We had a number of meetings with various people:
  - Art and Melissa met with Biogen to speak with them about staff
    changes and upcoming initiatives.
  - Art and Melissa met with the John Packowski and Vin Fabiani of the Kelly 
    Packowski MS Foundation to discuss how we can collaborate.
  - Art spoke with Sandy Siegel at the Transverse Myelitis Association
  - Art attended a Core Connections support group meeting
  - Anthony Everett came in to talk to us
  - Art spoke at Babson and Olin on starting different types of companies

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

>>> Events

o RSVP for our Annual Event this Saturday at the MIT Faculty Club:
  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 The weather was in our favor on September 26th for the Accelerated Cure 
  Project's third annual Tee Off to Cure MS golf tournament at Charter Oak 
  Country Club in Hudson, MA.   Thanks to the hard work of Jacqui McCoy, 
  Jayne Casey and Mark Aher, we raised over $35,000!

o Three cheers to Anthony Russo of Milwaukee, who ran the Milwaukee
  Lakefront Marathon through the Sense of Purpose program to raise
  money for Accelerated Cure Project.  A picture of Anthony running
  the marathon can be found here:
  http://www.acceleratedcure.org/events/biggerpic.php?image=/events/tshirtpics/acp-t-russo-med.jpg&title=T-Shirt%20Photos


o Kemp Jaycox and The Greater Cincinnati Cure Project (GCCP) raised
  over $2200 at their first fundraising event - a wine tasting and
  silent auction.  Congratulations!  Stay tuned for future GCCP
  events!

o On October 15th, Stephen Harrison and his committee raised over $5000 at 
  their Scavenger Hunt and benefit concert in New York City.  Stephen and his 
  committee did a great job!

o Also on October 15th, Carrie Bryant and her committee executed
  Accelerated Cure Project's most successful fundraising event ever
  in Middlebury, VT.  Carrie's Walk to Cure MS raised over $67,000
  for Accelerated Cure Project!  See how much fun we had:
  http://www.acceleratedcure.org/events/eventpages/20051015_carriewalk.php

>>> Operations

o Dave Kaffine and Joan Coyne working on donor database

o Dave Baker helped with the final stages of upgrading our server and
  reorganizing our computer systems into a beautiful new rack with
  everything labeled.

o 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.

o 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 during the
  event and the following week.  Contact Julie at
  julie at acceleratedcure.org, 781-487-0008 for more information.

o The Fall 2005 newsletter has gone out.  If you did not receive your
  copy it is most likely because you did not respond to our opt-in
  mailing and were taken off the mailing list.  To be put back on the
  mailing list, contact Julie at julie at acceleratedcure.org,
  781-487-0008 or sign-up again here:
  http://www.acceleratedcure.org/about/joinemail.php

o A new volunteer has joined our efforts.  Jacqueline Bollens is now
  volunteering on a regular basis at the Accelerated Cure Project
  office in Waltham, MA.

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

September Volunteers

o Administrative Assistant
  Susan Mellor

o Accelerated Cure Party for MS
  Debbie Mellor
  Charlie Namias
  Stephanie Sisto
  Jill McGaffigan
  Lisa Desautels
  Louisa Kasdon
  Jane Shapiro

o Admin
  Peter Schmidt
  Jacqueline Bollens

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

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

o Development
  David Hirschberg

o Donor Database
  Dave Kaffine

o Fundraising
  Pat Phelps
  Stephanie Sisto

o MRI Economics Paper
  Rob Lester

o MS Presentation
  Tory Bresnahan

o Neuroanatomy Paper
  Jennifer Tobin

o Newly Diagnosed Class Project
  Joan O'Connell

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

o Pharmaceutical Database
  Scott Feier

o Repository Business Plan
  Peter Schmidt

o Research Paper Access
  Joel Brown

o Sing to Cure MS
  Marion Leeds Carroll
  Catherine Doucette
  Debi Robinson
  Nancy Costello
  Peter Schmidt
  Ruth Seidman
  Sandra Spring

o Tee Off to Cure MS
  Jacqui McCoy
  Jayne Casey
  Bill Meyer
  Anthony O'Shea
  Bryan Gildenberg
  Emily Paul
  George Peabody
  Kate Bragg
  Kate McDonough
  Nancy Medeiros
  Tim Bragg

o Contributed Goods and Services
  Clockwork Design Group, Inc.
  Matrix Media
  Mail Perfect, Inc.
  Clock Tower Law Group, Inc.
  Return Path

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