[acceleratedcure.org] informal status since last reported on 03/23/05

[Art Mellor]

Accelerated Cure Project informal status since last reported on 03/23/05:

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

>>> Joining/Leaving Us This Month

o The Accelerated Cure Projects welcomes new staff member, Sarah Nels,
  who will be working in development as our Events Manager.  You can
  read her bio and see her picture here:
  http://www.acceleratedcure.org/about/people.php?section=2&id=71

o We said farewell to Niko White who was a temporary employee for the
  past few months while we conducted our search for permanent Events
  Manager.

o Student volunteer, Kate Parizeau of Noble and Greenough, is doing
  community service work for us and creating a document on
  "Understanding Your Labs" for all those tests you have to take when
  you have MS.

o Student volunteer, Russell Lieberman of Buckingham, Browne, and
  Nichols School in Cambridge, MA joins us to assist with community
  outreach efforts and general office tasks through the end of his
  senior school year.

>>> Cure Map/Tissue Bank

o Now that the pilot collection for the blood, data and tissue bank is
  well underway, we have been preparing for the next phase which will
  collect far more samples and involve several collection sites across
  the country.  We are considering what types of and how many blood
  samples to collect, updating our study protocol and questionnaire,
  contacting MS clinics, and looking into the possibility of engaging
  a contract research organization (CRO) to manage the sites for us.
  Our Scientific Advisory Board epidemiologist, Ruth Ann Marrie, did
  an intensive review of our (quite lengthy) questionnaire.

o At the AAN meeting, we convened a meeting of about 15 MS scientists
  and researchers on the topic of improving/enhancing MS sample
  banking.  Participants discussed a number of issues that could be
  worked on in a collaborative manner.  We will be following up with
  everyone to see what specific efforts could come from this.

o Hollie is continuing to work on the HuGE review of HLA DR2 and MS. 
  The paper is nearly finished, and she and her collaborators are making 
  decisions about graphic aids to help convey the large of information 
  covered in the review.

o Hollie is also continuing to work on Phase 2 of the pathogens track, 
  and is updating the Phaes 2 genetics spreadsheet with papers from 2004/2005.

o We all attended the American Academy of Neurology meeting in
  Miami. We met with many researchers and went to many
  presentations. You can read the full write up of what we did here:
  http://www.bostoncure.org:8080/article.pl?sid=05/04/21/1219239

>>> Fundraising

o The Watercove Charitable Foundation matching challenge is still
  on. They will match any contribution or pledge of $1,000 or more
  made before June 30th up to $150,000. We've already raised $93,000
  towards this goal. Consider doing a quarterly gift of $250 to
  qualify. 

>>> Education

o Volunteers Rob Lester and Jen Tobin are working on papers about MRI
  Economics and Neuroanatomy. Kate Parizeau is working on
  "Understanding your Labs."

o Volunteer Martha Garrett completed another book review available
  here:
  http://www.bostoncure.org/msresources/library.php#bookreviews

o MSNews (http://msnews.bostoncure.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 Our latest newsletter is available for download here:
  http://www.bostoncure.org/downloads/acp-update-vol0401.pdf

o We had a number of meetings and phone calls:
  - Aldo Rossini at UMass to talk about sample usage in diabetes
  - CROs: Covance, Quintiles, ABT Associates, PPD
  - Thanks to John Hancock we got to meet with political consultant
    John Sasso re: getting government funding
  - Karen Gray of Johnson and Johns about sample usage
  - SAB member Michael Racke
  - Core Connections support group leader Alan Weinberg
  - Young Women with MS in Boston group leader Amy Carrier
  - Art presented at Neal Harris and Donna Kelly's Babson class
  - Jonathan Katz re: future fundraiser
  - Supporters Maggie Sherman and Penny Kehl

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

>>> Events

o Congratulations to Accelerated Cure Project's 2005 Boston Marathon
  Team, Kelly Corrigan, Mark Aher, Angela Robinson, Carol Rose, and
  John Gannon for completing the 109th Boston Marathon on April 18,
  2005.  This amazing group of individuals raised more than $30,000
  for the Accelerated Cure Project through diligent fundraising
  efforts and a great deal of training. Pictures will be up in the
  next week or so.

o We'd also like to recognize Sense of Purpose supporter, Ashley Brody, and 
  Advisor, Mike Gonnerman who both ran the marathon as well!

o As a result of his marathon participation, Mark Aher, and his wife,
  Jacqui McCoy (Director) were interviewed on NECN morning news on
  April 15 to speak about the efforts of the Accelerated Cure Project
  and their respective roles in the organization.  The interview can
  be seen here (4/15 - Accelerated Cure Project):
  http://www.boston.com/news/necn/Shows/gml/

o On Saturday, April 23, the Edmund J. Medeiros foundation hosted its
  annual MS Research and Somerville High Sports scholarship fundraiser
  at the Dante Club in Somerville, Massachusetts - a fun event and a
  portion of the proceeds will be donated to the Accelerated Cure
  Project.

o Accelerated Cure Project introduces a new event for supporters
  nationwide.  "Dine to Cure MS," an event in which supporters across
  the country host dinner parties to raise money for our efforts to
  determine the causes of MS, will take place from 6/18-6/25/05.  For
  details and to sign up visit:
  http://www.acceleratedcure.org/dine

o Sign up today for the fourth annual Hunt to Cure MS scavenger hunt
  taking place Saturday, May 21 at the Skellig pub and restaurant in
  Waltham, MA.  You can put your own team together for this fun event
  or have us place you on an existing one.  All details can be found
  here:
  http://www.bostoncure.org/hunt

o We are seeking players and sponsors for the 3rd annual Tee Off to
  Cure MS Golf Tournament taking place Monday, September 26 at Charter
  Oak Country Club in Hudson, MA.  For further details visit:
  http://www.bostoncure.org/events/eventpages/20050926_golftourney.php

o Save the date for the Accelerated Cure Project's Annual Party which
  has been scheduled for Saturday evening, October 29.  More details
  to come!
  http://www.bostoncure.org/events/eventpages/20051029_bcp_party.php

>>> Operations

o Boston Cure Project had an exhibit booth at the 2005 annual meeting
  of the AAN. 

o Annual Reports have been mailed out to those who contributed $250 or
  more in 2004.  It may also be viewed at:
  http://www.acceleratedcure.org/about/annualreport.php.

o We now have Accelerated Cure Project t-shirts available, along with
  a limited number of long sleeve shirts. Send us your size, address,
  and we'll send you one. Then send us a picture of you wearing it.

o Our 2004 audit is almost complete.  Keep an eye out for our upcoming
  financials.

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

March Volunteers Reporting Hours

Administrative Assistant
Sue Mellor

Boston Marathon Fundraising
Mark Aher
Carol Rose
Angela Robinson
Jacqui McCoy
John Gannon
Kelly Corrigan

Book Reviews
Martha Garrett

Boston Marathon
Jacqui McCoy
Mark Aher
Carol Rose
John Gannon
Angela Robinson
Kelly Corrigan
Greg Higgins

Dine to Cure MS 2005
Debbie Mellor

Donor Database
Dave Kaffine

Fitsense Fundraising
Ashley Brody

Fundraising
Charlie Namias

Golf Tournament
Jacqui McCoy
Jayne Casey

Letter Writing Campaigns
Joanne Anderson
Linda Falcone

Low Country MS Tour
Terri Bleam
Linda Socie

MRI Economics Paper
Rob Lester

Neuroanatomy Paper
Jen Tobin

NYC Event
Phil Luongo

Operation Missing Link
Debbie Mellor
Katherine Mosley
Lily Towers

Public Relations
Bill Meyer

Scavenger Hunt to Cure MS
Amanda Song
Debbie Mellor
Lily Towers
Nancy Medeiros
Stephanie Sisto
Jane Shapiro

Sing to Cure MS
Marion Leeds Carroll

Volunteer Introduction Document
Peter Schmidt

Contributed Goods and Services
Clockwork Design Group, Inc.
Lisa Desautels
Torraspapel
RIS Paper Company
Kirkwood Printing


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