[Accelerated Cure Project Status] informal status for June 2007

[Art Mellor]

Accelerated Cure Project informal status for the month of June 2007:

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

>>> Joining/Leaving Us This Month

o No changes last month

>>> Research

Repository:

o We now have 520 subjects enrolled at our five active centers.

o Our sixth site, the University of Texas Southwestern at Dallas,
  received IRB approval to begin enrolling subjects (adults and
  children). You can see the complete status here:
  http://www.acceleratedcure.org/repository/status.php

o Two of our sites have new study coordinators (Lauren Puccio at MSRCNY 
  and Breanna Bullock at Barrow).

o Our first pediatric patient, 2-year-old Will White, came up from South 
  Carolina with his family to enroll in our repository at UMass Memorial.
  You can read/see the press we got here:
  http://www.acceleratedcure.org/news/bcp/20070625-worcestertelegram.php
  http://www.acceleratedcure.org/news/bcp/20070628-wbztv.php

o We continue to receive proposals for use of our samples and data in 
  scientific projects and to move forward on the legal work for
  currently accepted proposals.

o We've finished compiling the longitudinal version of our
  questionnaire and have sent it to DSG for implementation.

Other scientific projects:

o The drafts of our Phase 1 and 2 Trauma track documents are completed 
  and these are now being reviewed.

o Hollie and Art met with Ken Mandl of Children's Hospital to learn 
  about his health monitoring research.

o Art spoke to Shawn Murphy at Harvard about his work on software to
  discover relationships in large data sets

>>> Fundraising

o Less than $125K left to meet Water Cove Charitable Foundation's $1
  million matching challenge and you can help.  Make a gift of $1,000
  or more and the foundation will match it one to one.  Pledge that
  same gift for 3 years and they'll double match it.  If you can't
  pledge $1,000, gifts of any size always help.  For more details
  contact Melissa O'Shea 781/487-0011 or melissa at acceleratedcure.org

o Jane Follansbee, our new Events Coordinator, started on June 8th and
  is now handling all east coast events and volunteer initiatives.  If
  you're interested in supporting us by doing a letter-writing
  campaign or organizing and running a fundraiser in your area, please
  contact her at jane at acceleratedcure.org

o Sarah Nels continues to make progress in getting our new office
  established in San Francisco and has been connecting with supporters
  in the bay area offering to help. If you can help with this effort,
  please email her at sarah-sf at acceleratedcure.com

>>> Education

o Poll - What's your birth order? Let us know at:
  http://msnews.acceleratedcure.org/node/2727

o We've gotten a few press mentions:
  http://www.acceleratedcure.org/news/bcp/20070628-wbztv.php
  http://www.acceleratedcure.org/news/bcp/20060628-expresscincinnati.php
  http://www.acceleratedcure.org/news/bcp/20070625-worcestertelegram.php
  http://www.acceleratedcure.org/news/bcp/20070521-walthamdailynews.php

o We continue our daily MS News updates

  http://msnews.acceleratedcure.org

>>> Community Building

o Art continued to work with the newly formed MS Consortium, helping
  to get the incorporation going.

o Art, Melissa, Sara, and Jane visited UMass Memorial Medical Center
  in Worcester this month to meet the White family whose 2-year old
  son, Will, has Transverse Myelitis and who traveled to Massachusetts
  to participate in the MS Repository blood and data collections mid
  month.

o Melissa, Jane, and Art spent an afternoon at the Franklin Park Zoo
  meeting up with David Hirschberg, VP of Institutional Advancement,
  who provides development advice and assistance as a volunteer to
  Accelerated Cure Project.

o Art, Melissa, and Jane had dinner with Ithaca, NY-based star
  volunteer Pat Phelps and her daughter, Amy Carrier.

o Bob and Priscilla Guidara stopped by while visiting Boston. We met
  over the net due to Bob's work trying to get SSDI modified to help
  people with relapsing diseases like MS. Sign his petition here:
  http://www.acceleratedcure.org/petition/

o Art spent some time giving feedback to the folks at
  http://www.patientslikeme.com on their very cool web site to help
  track your health, meds, disease.

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

>>> Events

Detailed information about all of our upcoming events can be found on
our web site: http://www.acceleratedcure.org/events/calendar.php

July 25: Enjoy dinner, drinks and live music at Orleans Restaurant in 
Somerville, MA at the Second Annual Benefit to Cure MS. Tickets and 
information are available here: 
http://www.acceleratedcure.org/events/eventpages/20070725_orleans.php

September 9: Join the Greater Cincinnati Cure Project for the Second 
Annual Canine Happy Hour featuring a cash bar, concession stand, live 
music, 3.5-acres off-leash area for dogs, silent auction, goody bags 
and a raffle/giveaways for all. 
http://www.acceleratedcure.org/events/eventpages/20070908_canine.php

November 17: Save the date for the Seventh Annual Accelerated Cure 
Party at the MIT Faculty Club in Cambridge, MA. 
http://www.acceleratedcure.org/events/eventpages/20071117_acp_party.php


>>> Operations

o Smooth sailing, nothing big to report this month

>>> Volunteer Efforts Reported Last Month

--Contributed Goods and Services--
  Clockwork Design Group, Inc
  Matrix Media
  Mail Perfect
  Michael Van Auken
  Extended Stay Deluxe
  Holiday Inn Express
  Sheraton Harrisburg Hershey
  Acote Boston
  Bill Burke of Burke Distributing
  Dell Fisher
  Exclusive Transportation Inc.
  Grill 23
  Massage Therapy Associates at Serenity Yoga & Wellness Center
  Outback Steakhouse
  Pampered Chef
  Solea Restaurant & Tapas Bar
  The Comedy Connection
  Anonymous

--Admin--
  Bonnie Hakkinen  
  Kelly Novak  
  Lori Stephenson  
  Jane Shapiro  

--Sing to Cure MS 2007--
  Marian Leeds Carroll  

--Donor Database Project --
  Dave Kaffine  

--Benefit to Cure MS 2007--
  Holly Perreault  

--Benefit Concert to Cure MS 2007--
  Pat Phelps  
  Sandi Lowe 
  Deirdre Yavorsky  

--Repository MRI Project--
  Sue Ropiak  

--Dance to Cure MS 2008--
  Deb DuFault  

--Health & Beauty Fair--
  Cher Kore  

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