[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.

>>> Joining/Leaving Us This Month

o Sara Loud is out on maternity leave having recently graced the world
  with her daughter Charlotte. Congrats to Sara and Jim!

o Sue Ropiak has joined us to hold down the fort (well, repository)
  while Sara is out.

o David Pulsifer has joined our Board of Advisors and his bio can be found 
  here:
  http://www.acceleratedcure.org/about/people.php?section=6&id=81

o Jonathan Sabia has joined us for a few weeks as a temp admin to help
  us get caught up - things are really heating up around here.

>>> Cure Map/Repository

Repository:

o We have moved our study initiation date back to our original goal of
  April 15 to ensure that we can complete a thorough testing of the
  electronic case report form (the electronic version of the
  questionnaire) prior to enrolling participants.

o The Johns Hopkins Hospital in Baltimore is our second site to
  receive approval from their Institutional Review Board (IRB) to
  participate in the study, and joins the Shepherd Center in Atlanta
  which was granted approval in February.  The other sites have also
  made progress in this direction.  We also have a signed contract
  with Johns Hopkins and have conducted webcast training with the
  sites about the study and about the electronic data capture system.

o We have been finalizing the documentation that will be sent to the
  sites for reference throughout the study.  This will include
  laminated trifolds which we have developed for easy reference to the
  protocol and some tips on data entry.

o We held our first Investigator meeting with each of the four sites
  who will be launching our main repository collection.

o Our pilot study has collected samples and data from around 50 people
  at this point.  Another medical research laboratory has requested
  samples so we are getting the paperwork in order to facilitate this
  request.

o Seracare, the parent company of our storage vendor, just filed for
  bankruptcy. They aren't going out of business, but we are watching
  carefully and making contingency plans as they reorganize.

Other scientific projects:

o Hollie presented a scientific poster describing our repository at the 
  Massachusetts Biotech Council's Discovery Day conference on March 8.

o Hollie attended a two-day meeting organized by the Centers for
  Disease Control to discuss the possible establishment of disease
  registries for MS and ALS.  Such registries would help provide
  better information about the numbers of people diagnosed with these
  two diseases and where they live.  Currently no comprehensive
  registry or database exists for either MS or ALS in the US.

o We are looking forward to the "Infections in MS" workshop to be held 
  in Barcelona on May 3 and 4 in conjunction with a conference on HHV-6. 
  The agenda and speaker list is shaping up very nicely!

o Art and Hollie met with the leaders of a company called BG Medicine,
  based in Waltham, MA, about how their novel integrated systems
  biology platform for investigating diseases could be used in MS.

o Art met with Cal Collins of OpenClinica.org - an open source
  clinical data management platform. It could prove to be useful to us
  as we go forward.

o Ben Greenberg, our lead investigator for the repository, came to
  speak at our board meeting about the research being conducted at
  Johns Hopkins and how the repository will help.

>>> Education

o As part of a project made possible by the Kelly Packowski MS
  Foundation that aims to provide more comprehensive information to
  individuals receiving their MS diagnosis for the first time, letters
  have been sent out to over 200 neurologists in New England offering
  them 50 free copies of our educational booklet to give out to
  patients:
  http://www.acceleratedcure.org/downloads/bcp-ms-whatsnext.pdf

o Melissa and Art had lunch with Uri Dreckshage and Lisa Cox of Teva
  Neuroscience to discuss Teva's educational grant to fund production
  and distribution of a new career coaching booklet to be developed
  for us by Rosalind Joffe this summer.

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 flew down to Maryland to attend the FDA Advisory Committee
  meeting on Tysabri. It was interesting to see the process in action
  and how much attention there was from so many different groups.

o Art was quoted in the globe regarding the FDA's Advisory Committee
  meeting on Tysabri:
  http://www.acceleratedcure.org/news/bcp/20060323-bostonglobe.php

o Art and Melissa traveled to Naples, FL this month where Director
  Mike Yashko and his wife Lori hosted an informational meeting about
  our efforts at their local country club.  The meeting was well
  attended by local supporters, and individuals affected by MS in the
  Naples area.

o Naples supporter and PR expert Chris Wells has developed a new
  Accelerated Cure Project "Frequently Asked Questions" document for
  us for the press:
  http://www.acceleratedcure.org/downloads/press-ms-acp-facts.pdf

o Melissa and Sarah caught up with volunteers Pat Phelps and her
  daughter Amy over dinner.

o Thanks to our friends at Titan WorldWide, Teller Graphics, and
  Clockwork Design Group, Accelerated Cure Project has three large
  (~4'x5') signs in Copley, State, and Porter Square subway stations
  of Boston right now advertising its Scavenger Hunt.

o Accelerated Cure Project is pleased 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. Accelerated Cure
  Project will benefit from Magno's upcoming fundraiser nicknamed The
  MS-Express, his 4,300 mile cross-country trek in an antique,
  electric wheelchair. To learn more about the foundation and its
  MS-Express, visit http://www.thespiritofhope.org/ Check out the site
  for the latest MS news and resources, and be sure to subscribe to
  their monthly e-mail newsletter for regular updates.

o We've had talks and meetings with a number of other folks:
  - Art attended another fantastic Biotech Tuesday meeting of
    representatives from hundreds of local biotech companies.
  - We've had a number of calls and meetings with the new management
    of the NMSS
  - Art and Hollie met with Arthur Roach for the neuro research group
    at Serono
  - Eric Elia of Brightcove will be helping us get streaming video
    running on our site
  - Mark Halliday, Alan Weinberg and George Peabody will be helping us
    out with video content
  - Art met with Michael Panzera and Amy Brockelman at Biogen to talk
    about the Tysabri risk management plan
  - Art, Melissa, and Mike Yashko met with the MS Home folks in
    Naples,FL

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

>>> Fundraising

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

>>> Events

o Art, Melissa, and Sarah attended a Teva marketing seminar recently
  in Braintree, MA where we met with various individuals affected by
  MS and had an opportunity to tell them about our efforts.

o Accelerated Cure Project will have a team of 13 people running on
  its behalf in the 110th Boston Marathon on Monday, April 17th.  For
  more details and to make a contribution in honor of any one of our
  amazing runners, visit: http://expansion.acceleratedcure.org/mar06/.

  Note: The Gerald Sweeney Family Foundation has graciously agreed to match 
  every contribution made to runner, Kirsten Cunningham up to $10,000!

o The New York Cure Project will be hosting a cocktail party on Thursday, 
  April 20th from 6:30-8:30pm at Thom Thom's in Wantagh, NY.  Click here to 
  RSVP: http://expansion.acceleratedcure.org/nycinvite

o The Medeiros Family is holding its annual MS and Sports Scholarship 
  fundraiser in Somerville, MA on Saturday, April 28th: 
  http://www.acceleratedcure.org/events/eventpages/20060429_medeiros.php

o Our Fifth Annual Scavenger Hunt is taking place on Saturday, May 20th at 
  The Skellig in Waltham, MA.  Registration is open and we're looking for 
  teams.  Sign up today: 
  http://www.acceleratedcure.org/events/eventpages/20060520_hunt06.php

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

>>> Operations

o Our 2005 Annual Report has arrived from the printers.  You can see
  it online here:
  http://www.acceleratedcure.org/downloads/acp-annualreport-2005.pdf

o The spring 2005 newsletter is now at the printers.  What for it in
  your mailbox in mid-April.  Right now you can see it here:
  http://www.bostoncure.org/news/newsletter.php

o We have a temp helping us out for several weeks.  Jonathan Sabia is
  making a lot of progress on several large projects.

o Dave Kaffine and Joan Coyne continue their work on the donor database.

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

We'll report 2 months worth next month!

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