[acp-status] status since last reported on 5/23/06

[Art Mellor]

Accelerated Cure Project informal status since last reported on 5/23/06:

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

>>> Joining/Leaving Us This Month

o Sue Ropiak wrapped up her consulting gig as temporary MS Repository
  Director as Sara Loud returned from Maternity Leave.
  http://www.acceleratedcure.org/events/biggerpic.php?image=/events/tshirtpics/acp-t-saracharlie-med.jpg&title=T-Shirt%20Photos

o Temp assistant Lindsey Davis wrapped up her assignment with us in May after 
  helping process an influx of contributions from spring fundraisers.

o Jessica Domnitz and Alexandra Cantley are college interns joining us
  through the summer to help with fundraising tasks our
  pharmaceutical database project and other projects.

o Our two summer Cure Map interns, Mike Yee and Ali AlHassani, have now 
  joined us and are working on updating the genetics Phase 2 documents and 
  doing research for the trauma Phase 2 track.  We are glad to have them 
  on our staff this summer.

>>> Cure Map/Repository

Repository:

o We collected blood and data from our first subject in the main study 
  on 5/24/2006 at Johns Hopkins!

o UMass received full IRB approval, has completed all necessary EDC
  and specimen handling training and will begin enrolling subjects in
  mid-July after they move to their new clinic.

o We signed the contract with the Shepherd Center in Atlanta and they
  have also completed all the necessary training.  We expect to
  activate the site in the next week or so at which point they can
  begin enrolling subjects.  They already have 90 potential subjects
  pre-screened.

o Other sites: UTSW is awaiting full IRB approval (they received
  conditional last month).  MSRCNY will receive the required sample
  handling and EDC training in mid-July and will then be ready to
  enroll.  Barrow recently submitted to the IRB and are in the process
  of working the contract and budget.

Cure Map:

o Hollie is in the final stages of editing the Nutrition phase 2 
  document and will be lining up someone to review it soon.

Other scientific projects:

o We met with folks at Bioscale and Praxeon - two bio-technology
  start-ups with offerings that may be of use to our efforts.

>>> Fundraising

o Accelerated Cure Project is pleased to announce that it has received
  grants from John Hancock Long Term Care, Sun Life Financial, and the
  Montel Williams MS Foundation recently. Thanks!

>>> Education

o The Kelly Packowski MS Foundation (http://www.kpmsfoundation.com) is
  offering a limited number of grants to individuals with MS in New
  England to cover the costs of eight months of coaching services from
  Rosalind Joffe of CIcoach.com (http://www.cicoach.com).  To learn
  more, contact Rosalind Joffe (rosalind at cicoach.com).

o There's a new poll up on MSNews:
  How has MS affected your ability to work?
  http://msnews.acceleratedcure.org/article.pl?sid=06/06/27/1354236

  Results from our last poll, Where do you live?, are here:
  http://msnews.acceleratedcure.org/pollBooth.pl?section=&qid=16&aid=-1

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've been getting a bit of press recently in the Boston Globe,
  Chemical & Engineering News, The Star, and the Observer:
  http://www.acceleratedcure.org/news/bcp.php

o We had a number of meetings with various people:
 - Art and Melissa met with supporter Dr. Maggie Harling (and her many 
   Airedale Terriers) to catch up on recent happenings.
 - Art and Melissa met with a group of people from John Hancock's Long Term 
   Care and Community Relations departments to update them on the
   progress of our efforts and partnership.
 - Art and Melissa met scientific advisor Dr. Fred Vinnick for lunch
   recently. 
 - Art, Melissa, and Sarah met with representatives of Teva
   Neuroscience and a group of doctors, nurses, and patients at Boston
   Medical Center interested in starting a social and educational
   group for young adults with MS.
 - Art met with the founders of patientslikeme.com - a site created to
   track patient reported data regarding treatment effectiveness to
   discuss the possibility of extending it to MS.
 - Art met with Jon Rosen of CIMIT, a group that helps find funding
   and partners for certain scientific projects

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

>>> Events

o Join us for a demonstration of the Segseat, a seated version of the
  Segway that can be used as an alternative to a wheelchair or
  scooter, on Monday evening, July 10th at 7:00pm in the 1st floor
  cafeteria of 200 Fifth Ave, Waltham, MA.  For further details or to
  RSVP for the seminar visit:
  http://www.acceleratedcure.org/events/eventpages/20060710_segseat.php

o We'll be participating in the Rare Neuroimmunologic Disorders
  Symposium in Baltimore next month. Details here:
  http://www.acceleratedcure.org/events/eventpages/20060719_neuroimmuno.php

o Lauren Smith is riding his bike from Chicago to Waltham to raise
  money to support our efforts. You can support him here:
  http://expansion.acceleratedcure.org/mspedal/ or read his blog
  http://blueskycollaborative.typepad.com/mspedal/

o Sierra Doherty hikes the 468-mile Colorado Trail to raise funds and
  awareness for several MS organization, including LDN for MS
  Research.  You can read about her effort or make a contribution
  here: http://cub.alaskapacific.edu/sdoherty/donate.htm

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

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 4,300 mile cross-country trek in an antique, electric
  wheelchair with his therapy dog Katie visit
  http://www.thespiritofhope.org.

o Sierra Doherty is hiking the Colorado Trail to raise funds for our
  LDN Research Fund:
  http://www.acceleratedcure.org/events/eventpages/20060602_trail.php

o Pix are up from the Marathon and the Scavenger Hunt:
  http://www.acceleratedcure.org/events/eventpages/20060520_hunt06.php#Start
  http://www.acceleratedcure.org/events/eventpages/20060417_marathon.php#Start

o Accelerated Cure Project had an open house on Tuesday 6/6 to show off its 
  new office space on the 5th floor of 300 Fifth Ave. in Waltham, MA.  Thanks 
  to all who dropped by to say hello.

o On the evening of 6/8, Accelerated Cure Project hosted an informational 
  seminar at Cafe La Fontana in Hatboro, PA.  Thanks to Tony Iannarone for 
  organizing the event, Teva Neuroscience for sponsoring food costs, and to 
  all those in the North Philadelphia area who traveled there to meet us.

o Accelerated Cure Project had a table at Teva Neuroscience's marketing 
  seminar in Quincy, MA this past weekend where Art and Sarah and volunteers 
  Martine Assaf and Nancy Costello made themselves available to participants 
  looking to learn more about our efforts.

>>> Operations

o Our Summer newsletter is available for download. Printed versions
  will be mailed in the coming weeks.
  http://www.acceleratedcure.org/downloads/acp-update-vol0502.pdf

o Volunteer Dave Kaffine began training Art on database programming so
  we can create our own reports and stop bugging him so much :-)

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

* Admin

Anthony O'Shea
Barbara Morgenlender
Joyce Ananian
Kelly Novak
Lisa Desautels
Steve Sherman
Sue Chamberlain

* Admin and Fundraising

Deb Dufault

* Coast to Coast bike ride

Kevin Welch
Michael Maher
Ryan Murphy
Thomas Sullivan

* Community Building

Gabe d'Annunzio
Martine Assaf
Tony Iannarone

* Cure Map

Monika Fekete

* Donor Database Project

Dave Kaffine

* Greater Cincinnati Cure Project Canine Happy Hour 2006

Barbara Mandell
Cindy Fink
Jodi Supinski
Kemp Jaycox
Rick Wilson
Ursula Hicks

* Million $ Cure

Marcella Cross

* MS Pedal to the Metal 2006

Eric Karls
Jeff Shapiro
Lauren Smith
Pam Carrison

* Neuroanatomy Paper

Claudia Wolf
Joel Jacobs
Patricia Smith
Yuko Rodriguez

* Operation Missing Link

Deb Mellor

* Personal Appeal

Pat Phelps

* Scavenger Hunt 2006

Aneeka Cheema
Bryan Gildenberg
Candy DuPont
Dan Mades
Deb Mellor
Debi Robison
Eva Alpert
Greg Polite
Jeff Shapiro
Jill McGaffigan
Joanne Minassian
Karen Mades
Keff Dolan
Lori Rosen
Maragret Doris
Mark Minassian
Molly Corbett
Nancy Costello
Nancy Gildenberg
Rebecca Petersen
Rich DiBiasio 
Stephanie Sisto

* Sing to Cure MS 2006

Marion Leeds Carroll

* Summer Intern

Alexandra Cantley
Jessica Domnitz

* May-June Contributed Goods and Services

Clockwork Design Group, Inc.
Acote Boston
Atlantic Masasge Therapy, P.C.
Bertucci's
Big City Pool Hall and Pizza Kitchen
Borghese Vineyards
Boston Beer Company
Boston Red Sox
Clock Tower Law Group
Comcast Spotlight
Holiday Inn Express, Downtown Spokane
Kitchen Kabaret
Maggiano's Little Italy
Massage Therapy Associates at Serenity Yoga & Wellness Center
Matrix Media
Randy's Car Wash, Inc.
Solea Restaurant and Tapas Bar
Spamnix Software
The Comedy Connection
WBZ-AM

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