[acp-status] status since last reported on 2/28/06

[Art Mellor]

Accelerated Cure Project informal status since last reported on 2/28/06:

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

Due to extensive travel (7 cities in 8 weeks), I didn't get a status
out last month, so this one is a double dose!

>>> Joining/Leaving Us This Month

o Satita Sangnam joins us as our Administrative Assistant.  Read her bio here: 
  http://www.acceleratedcure.org/about/people.php?section=2&id=84.

o Temporary admin Jonathan Sabia wrapped up his assignment with us.

o Temp assistant Lindsey Davis came on board to help with the
  processing of an influx of contributions from the Boston Marathon
  and Hunt to Cure MS scavenger hunt.

o Jessica Domnitz is a college intern joining us through the summer to 
  help with fundraising tasks and our pharmaceutical database project.

>>> Cure Map/Repository

Repository:

o We are pleased to report that results from the first study supported
  by our pilot samples will be presented next week at the FOCIS
  conference by Latisha Heinlen of the Oklahoma Medical Research
  Foundation.

o Johns Hopkins Hospital has been approved for enrollment and Dr.
  Benjamin Greenberg has approximately 30 subjects screened and ready
  to go. We expect data and sample collection from his first subject
  at about the time this status is published.  Also, we would like to
  congratulate him and his family on the recent birth of their second
  child, a girl!

o The other sites are also making progress toward being approved to
  enroll subjects.  The Multiple Sclerosis Research Center of NY has
  Institutional Review Board (IRB) approval for the study and we have
  signed their study contract. Both the University of Texas
  Southwestern Medical Center and the University of Massachusetts have
  received conditional IRB approval, with just a few questions needing
  to be resolved prior to full approval.  We have also signed a study
  contract with the University of Massachusetts and a contract with
  the Shepherd Center in Atlanta is pending.  Finally, we are
  initiating the regulatory process for a new site, the Barrow
  Neurological Institute in Phoenix, AZ.

o Samples collected during the pilot study are being sent to Dr.
  Alejandro D. Roth of the Montreal Neurological Institute and
  Hospital.  He will be comparing the proteins detected in the serum
  of subjects with MS to those detected in MS mouse models to point
  out the similarities and differences between humans and animal
  models.  

Cure Map:

o Our Phase 2 documents for the Toxic Agents track, written by intern
  Stephanie Lee, have been edited and reviewed and are now available
  on our web site.  The first one listed provides an overview of the
  research performed to date in this area, and the second provides
  "quick reference" tables of six toxic agents of particular note:
  http://www.acceleratedcure.org/downloads/phase2-toxicagents-analysis.pdf
  http://www.acceleratedcure.org/downloads/phase2-toxicagents-individual-agents.pdf

Other scientific projects:

o The "Infections in MS" workshop that we helped organize this month
  in Barcelona, Spain was very successful, bringing together over 40
  scientists and others interested in discussing the role pathogens
  may play in causing MS.  A report about this meeting will appear in
  our next newsletter.

o Hollie and Art attended the American Academy of Neurology (AAN)
  meeting in San Diego to hear about the latest research on MS.  You
  can read our meeting report here:
  http://msnews.acceleratedcure.org/article.pl?sid=06/04/13/1227234

o Hollie attended a one-day symposium presented by the Harvard Center
  for Neurodegeneration and Repair to see what is happening in related
  neurological diseases such as Alzheimer's and Parkinson's.

o Art and Hollie were invited by the National MS Society to sit in on
  one of their grant review sessions where a panel of scientists
  evaluate the scientific merit and relevance to MS of the grant
  proposals that have been sent in.  It was very informative and we
  send our appreciation to the NMSS for allowing us to view this
  process.

o Art and Debbie met with Sandy & Pauline Siegel and Leslie Cerio of
  the Transverse Myelitis Association (TMA) to talk about how we can
  partner together on our repository. TM is a disease that is very
  similar to MS and would each disease (MS & TM) would provide very
  interesting comparisons for each other.

o Art and Melissa met with folks at the Rocky Mountain MS Center so we
  could see what was involved in banking brains. We got to see some of
  their brains floating in glass jars - very cool!

o Volunteer Scott Yewell is looking into creating a copy of the Pilot
  Repository database at our site so we can start looking into the
  data collected so far and to make it easier to allow researchers to
  access it.

>>> Fundraising

o You can raise money for Accelerated Cure Project just by searching
  the Internet using a site called GoodSearch.com.  Here's how it
  works: Go to www.goodsearch.com, Type Accelerated Cure Project into
  the "I support" box and click on "verify," then search the Internet
  just like you would with any search engine.  GoodSearch shares its
  advertising revenue with charities and schools so every time you
  perform a search you'll be earning money for us.  The more people
  who use the site, the more money we'll earn, so please spread the
  word.

  We'll be the "Charity of the Day" on June 1

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 Live?
  http://msnews.acceleratedcure.org/article.pl?sid=06/05/23/1753211&mode=nested

o Rosalind Joffe continues to work on a new educational booklet for us
  (funded by Teva Neuroscience) which will address how individuals
  with MS can thrive in the workplace while dealing with the issues
  of chronic illness.

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 and Melissa met with Liz Lee, Julie DiCarlo, and Michele Van Leer of 
    Sun Life Financial to explore opportunities for partnership.
  - Melissa and Hollie had breakfast with Rusty Bromley, COO of the Myelin 
    Repair Foundation. Art met with Rusty while in California.
  - Art and Melissa caught up with Lisa Cox and Cindy Goodenberger at Teva 
    Neuroscience over coffee. They will be one of our sponsors for our
    annual event again this year.
  - Art and Melissa traveled to Colorado this month to meet with
    supporters and members of the MS community in Boulder, Denver,
    Golden, and Englewood.  Some of the people and organizations we
    met with were: -The Rocky Mountain MS Center -Linda Storey and
    Alison Zellner of "Rockin Out MS" -Corporate partner, Return Path
  - Bentley students did a PR project to help us spread the word about
    our Scavenger Hunt
  - In San Diego we met with a number supporters, one of whom gave us
    a tour of the Humane Society there where she works.
  - Art and Hollie met with people in New York, including the Michael
    J. Fox Foundation
  - Art attended a big conference in LA put on by Mike Milken that had
    a very interesting Health track
  - We're staying in touch with Brad Whitford to see when we can pull
    together another event with him
  - Art spoke on a Translational Research panel at the BIO conference
    in Chicago

o The new President of the NMSS, Joyce Nelson, has ushered in a new
  era for them by deciding that they should be working with other MS
  organizations more. To that end, Art was invited to participate in
  their annual Public Policy Conference in DC. It was a very
  interesting and fun few days visiting lawmakers on the hill to lobby
  for support on issues important to those with MS.

o David Roskelley got us some press by running in the Boston Marathon
  for us:
  http://www.acceleratedcure.org/news/bcp/20060502-desertnews.php

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

>>> Events

o On April 21st we hosted the first of what will be an ongoing series
  of 1.5-hr seminars for groups of 5-8 people designed to update and
  educate new and existing supporters about our efforts and programs.
  If you are interested in attended this type of meeting in the
  future, please contact Melissa O'Shea at melissa at acceleratedcure.org
  or 781-487-0011.

o Accelerated Cure Project continues to partner with The Spirit of
  Hope Foundation, a 501(c)3 nonprofit corporation based in Anacortes,
  WA.  Founded by Carlo Magno who has MS, this organization's mission
  is to raise awareness for handicapped accessibility issues and to
  provide funding and support for MS research.  For more details about
  Mr. Magno's upcoming 4,300 mile cross-country trek in an antique,
  electric wheelchair visit http://www.thespiritofhope.org/.  His
  journey begins June 4th!

o Special thanks to Mike and Laura Green and Mary Ellen Riley for
  organizing the Sing to Cure MS Jr. concert on Saturday, April 1st.
  The concert raised over $2600 for Accelerated Cure Project!  CD's of
  the concert are available here:
  http://www.acceleratedcure.org/events/eventpages/20060401_singjr.php

o Our thirteen Boston Marathon runners raised over $100,00, making the
  2006 Boston Marathon the largest fundraiser in Accelerated Cure
  Project history!  Congratulations and thank you to all of our
  wonderful runners and sponsors!

  Extra special thanks to The Gerald Sweeney Family Foundation who graciously 
  matched every contribution toward runner Kirsten Cunningham's effort.

o Thank you to volunteer Jeff Shapiro who manned Accelerated Cure
  Project's table at the New England Assistive Technology Marketplace
  Exposition in Hartford, CT on April 28th.

o Much praise goes out to the New York Cure Project who hosted a very
  well attended cocktail party in Wantagh, NY on Thursday, April 20th
  and raised over $3000!

o Thank you to Nancy and Judy Medeiros and the entire Medeiros Family
  for their continued support.  Their annual family fundraiser in
  Somerville, MA on Saturday, April 29th raised over $1100 for
  Accelerated Cure Project.

o Our 2006 Scavenger Hunt on Saturday, May 20th raised over $37,000
  for Accelerated Cure Project!  Pictures and hunt answers will be up
  on the web site soon.

o Four Babson College graduates are riding their bikes from Seattle to
  Boston to raise funds for Accelerated Cure Project.  You can read
  more and support their effort here:
  http://expansion.acceleratedcure.org/coasttocoast/

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

>>> Operations

o We've moved!  We are now located in the same office building, two
  floors up.  Our new location is more spacious and better suited to
  our needs.  We hope you'll come visit us!

o Network outages - if you were trying to reach us at the beginning of
  May and having problems, we apologize. Verizon managed to bring down
  our network (both primary and backup) and most of our phone lines
  for almost a week. We should be good to go at this point.

o The Spring 2006 newsletter has been sent out.  A PDF version is here: 
  http://www.acceleratedcure.org/news/newsletter.php

o We have completed the office portion of our yearly audit.  Our
  audited financials should be available next month.

o Accelerated Cure Project had a booth at the annual meeting of the
  American Academy of Neurology.  With volunteer Randy Smith we
  staffed a booth and were able to discuss our project with many
  conference attendees.

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

* April-May Contributed Goods and Services
  Clockwork Design Group, Inc.
  Clock Tower Law Group
  Matrix Media
  Jillian's Boston
  Robert Brown
  David Kuo

* Volunteer Efforts for Status March 2006
  - Admin
    Deb Mellor
    Jane Shapiro
    Joyce Ananian
    Judy Medieros
    Kelly Novak
    Nancy Medieros
    Sue Chamberlain
    Barbara Morgenlender
    Alex Bargar

  - Admin and Fundraising
    Deb Dufault

  - Boston Marathon 2006
    Carol Rose
    David Roskelley
    Jake Miller
    Kirsten Cunningham
    Libby Isaacson
    Megan O'Halloran
    Michele Van Leer
    Nancy Costello
    Rona Gugliemino
    Sophia Diamantis
    Stephen Harrison
    Steve Fultz

  - Community Building
    Martine Assaf
    Chris Wells

  - Donor Database Project
    Cindy Elia

  - Fundraising
    Vicki Finlayson

  - Greater Cincinnati Cure Project 2006
    Kemp Jaycox

  - HBS VCO MS Resources Matrix
    Peter Bowen

  - Letter Writing Campaign
    Andrea Feldman

  - MS Pedal to the Metal 2006
    Lauren Smith

  - Neuroanatomy Paper
    Jennifer Tobin

  - NYCP Long Island Event 2006
    Jennifer Paretta
    Phil Luongo
    Sarina Sivili

  - Operation Missing Link
    Deb Mellor

  - Personal Appeal
    Pat Phelps

  - Scavenger Hunt 2006
    Deb Mellor
    Jill McGaffigan
    Joanne Minassian
    Nancy Costello
    Stephanie Sisto

  - Sing to Cure MS jr 2006
    Laura Green
    Mary Ellen Riley
    Mike Green

  - Teva Event
    Marie Rudzinksy

* Volunteer Efforts for Status April 2006

  - Admin
    Barbara Morgenlender
    Joyce Ananian
    Judy Medieros
    Kelly Novak
    Nancy Medieros
    Sue Chamberlain

  - Admin and Fundraising
    Deb Dufault

  - Boston Marathon 2006
    Anne Carey
    Carol Rose
    David Roskelley
    Father Bernard Marton
    Jake Miller
    Kirsten Cunningham
    Libby Isaacson
    Megan O'Halloran
    Michele Van Leer
    Nancy Costello
    Randy Smith
    Rona Gugliemino
    Scott Tamosunas
    Sophia Diamantis
    Stephen Harrison
    Steve Fultz

  - Brain Bank Workshop
    Rob Lester

  - Community Building
    Gabe d'Annunzio
    Jane Shapiro
    Jeff Shapiro
    Martine Assaf

  - Greater Cincinnati Cure Project Canine Happy Hour
    Barbara Mandell
    Cindy Fink
    Ellen Bennett
    Jodi Supinski
    Kemp Jaycox
    Meryl Tesler
    Rick Wilson
    Ursula Hicks

  - HBS VCO MS Resources Matrix
    Peter Bowen

  - Letter Writing Campaign
    Andrea Feldman

  - MS Pedal to the Metal 2006
    Lauren Smith

  - Neuroanatomy Paper
    Jennifer Tobin
    Pat Smith
    Yuko Rodriguez

  - NYCP Long Island Event 2006
    Jennifer Paretta
    Phil Luongo
    Sarina Sivili

  - Operation Missing Link
    Deb Mellor

  - Personal Appeal
    Pat Phelps

  - Scavenger Hunt 2006
    Amanda Song
    Deb Mellor
    Debi Robison
    Joanne Minassian
    Nancy Costello
    Rebecca Petterson
    Stephanie Sisto

  - Scientific Research
    Monika Fekete

  - Sing to Cure MS jr 2006
    Laura Green
    Mary Ellen Riley
    Mike Green

  - Spinathon	
    Cori Ellen Grande

  - State by state membership drive
    Pam Carrison

  - Teva Event
    Marie Rudzinksy

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