[bostoncure.org] Status since 01/13/05

[Art Mellor]

Boston Cure Project informal status since last reported on 01/13/05:

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

>>> Joining/Leaving Us This Month

o Nina Mann, a student at MIT, finished her work on the first draft of
  the Phase 1 Trauma (physical) document in January and has gone back
  to her studies.

o Niko White is temping for us for a while. He's helping Melissa out
  on a variety of Development related activities.

>>> Cure Map/Tissue Bank

o Art and Hollie met with Tim Coetzee, who directs research training
  programs as well as tissue banking initiatives at the National MS
  Society.  We had a good discussion about mutual goals concerning MS
  research, as well as funding opportunities available through the
  NMSS which we will be exploring.

o Now that our pilot collection for our blood, tissue and data bank is
  well underway, we are planning the expanded follow-on collection.
  consultant Diane Gaucher has started updating key documents such as
  the study protocol and informed consent agreement.

  Also, Art and Hollie recently met with representatives of Cato
  Research, a contract research organization, as well as with the
  Coriell Institute, which maintains a number of biological sample
  repositories, about potentially being involved in the next phase.
  
  We are also starting to contact additional MS clinics about joining
  our study as collection sites. Dr. Peter Calabresi at Johns Hopkins
  has expressed interest in becoming our next site and we are starting
  work on the regulatory and contractual details.

o Art and Hollie flew to Buffalo, NY to meet with several of the
  physicians and staff at the Jacobs Neurological Institute.  They are
  doing impressive work in a number of areas including neuroimaging
  and MS clinical data collection.  We hope to work with them further
  in the future.

o We've been meeting with and talking to various reps from Pharma to
  discuss potential uses of the samples in research linked to causes
  of MS.

o We are planning to host a special interest group meeting on MS
  sample banking at the American Academy of Neurology meeting in
  April.  Hollie has contacted a number of scientists who collect or
  work with MS samples, and so far most have been enthusiastic about
  having such a meeting.

>>> Fundraising

o Once again, our generous supporter, The Water Cove Charitable
  Foundation, has offered to match any gift or pledge (payable by
  12/31/05) of $1,000 or more made now through June 30, 2004.  This
  year, these gifts will be matched up to a total of $150,000! - quite
  a big goal, so please help us take advantage of this generous offer
  if you can as we don't want to leave any of the $150,000 unclaimed.

o More than 2,000 appeal letters have been sent out to our base of
  constituents asking for support in the form of an annual gift.  Sent
  only twice per year and never to anyone who has already made a gift
  in the last nine months, we rely on responses to these mailings to
  keep the organization thriving.  Your support is greatly
  appreciated.

o Melissa attended the Kelly Packowski MS Foundation's annual black
  tie fundraiser on January 29th at the Boston Harbor hotel at which
  she met founders John and Kelly Packowski as well as some of their
  board members and learned how the group has been raising funds to
  improve lives of individuals touched by the disease.  For more
  details about the foundation visit their new website
  http://www.kpmsfoundation.com

o Melissa had a conference call with Carol Menaker of the Myelin Repair 
  Foundation to talk about collaborating on some PR-related initiatives.

o We are pleased to announce that the runners for our first ever
  Boston Marathon team have been selected!  They are: Mark Aher of
  Needham, MA, Kelly Corrigan of Belmont, MA, John Gannon of Dallas,
  TX, Greg Higgins of Parksville, B.C. Canada, Angela Robinson of
  Maitland, FL, and Carol Rose of Ledyard, CT.

>>> Education

o Our volunteer Rob Lester completed his interview with Dr. Yash
  Agrawal on the use of low-dose naltrexone to treat MS.  You can find
  this interview at:
  http://www.bostoncure.org/msresources/library.php#interviews
  http://www.bostoncure.org/downloads/interview-agrawal.pdf

o Martha Garrett and Rosalind Joffe have sent in book reviews. Both
  are available here:
  http://www.bostoncure.org/msresources/library.php#bookreviews

o We've posted links to a number of other MS related organizations:
  http://www.bostoncure.org/msresources/other.php#orgs

o Jen Tobin is slowly but surely making progress on her neuroanatomy
  paper and Katie Parizeau, a Nobles and Greenough high school
  student, will be joining us later this year to work on a paper
  describing what all the tests you get at the doctor for your MS are
  all about (based on a suggestion several years ago by Margaret
  Doris). 

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 We had a number of meetings and phone calls:
  - Spoke to Kristin Loomis at the HHV-6 Foundation about links to MS
  - Caught up with Tim Vartanian at his lab
  - Attended a UPOP lunch at MIT to meet potential summer interns
  - Helped Reese Howle find someone to help with an MS twin registry
  - Met with Steve Triedman, Chair of the Executive 
    Committee of the Rhode Island Chapter of the National Multiple
    Sclerosis Society.
  - Met with Phyllis Baron at Blue Cross Blue Sheild to talk about how
    she could help
  - Continued meeting with John Hancock team
  - Visit Jonathan Katz while he got his 2nd Tysabri infusion - and
    saw his show at the Jimmy Tingle Theater:
    http://www.theatermania.com/content/show.cfm/show/108465
  - Met with Vicki Sato of Vertex to talk about how she can help

o Volunteer Joyce Ananian has compiled our history of feedback from
  our constituency. You can see what people think here:
  http://www.bostoncure.org/news/feedback.php

o Hollie Schmidt was voted one of the 10 women to watch in New England
  by Mass High Tech:
  http://www.bostoncure.org/news/bcp/20050124-masshightech.php

o Our quarterly print newsletter has been mailed. You can download a
  copy here:
  http://www.bostoncure.org/news/newsletter.php

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

>>> Events

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/events/eventpages/20050521_hunt05.php

o The Medeiros Family Third Annual Sports Scholarship and Multiple
  Sclerosis Research Fundraiser Party is scheduled to take place on
  Saturday evening, April 23 in Somerville, MA.  For details about
  this fun night out visit:
  http://www.bostoncure.org/events/eventpages/20050423_medeiros.php

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

o Director, George Peabody, and his daughter, Anna, will be guest
  speaking at the St. Clair River MS Fundraiser's annual fundraising
  party event in Marine City, Michigan on March 5.  For details visit
  http://www.thetimesherald.com/news/stories/20050221/localnews/2011819.html
  or Contact Dorothy DeBoyer at 810/794-7218.

>>> Operations

o Dave Kaffine continues to improve the donor tracking database he has
  created for us.

o Dave Baker is helping us upgrade our server

o Julie is preparing us for our exhibit booth at AAN annual meeting
  2005 in Miami in April

o 2004 Annual Report is almost ready to come out

o Julie received accounting lessons from Mike Gonnerman - learned
  basics of how to read financial statements

o Julie and sue are preparing for our 2004 audit.

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

January Volunteers

Administrative Assistant
Sue Mellor

Administrative Work
Barbara Morgenlender

Annual Report
Dave Henderson

Book Reviews
Martha Garrett

Boston Cure Party 2004
Leslie Wolf

Boston Marathon Fundraising
Mark Aher
Carol Rose

Cure Map
Nina Mann

Donor Database
Joan Coyne
Dave Kaffine

Golf Tournament
Jacqui McCoy
Jayne Casey
Mark Aher

LDN Project
Rob Lester
Dr. Yash Agrawal

Letter Writing Campaign
Joanne Anderson
Phyllis Baron

Neuroanatomy Paper
Jen Tobin

Newsletter
Barbara Morgenlender
Lisa Desautels
Joyce Ananian

NYC Event
Philip Luongo

Quote Project
Joyce Ananian

Scavenger Hunt to Cure MS
Kevin Abramson
Nancy Costello
Nancy Medeiros
Debbie Mellor
Debi Robison
Stephanie Sisto

Volunteer Introduction Document
Peter Schmidt

Contributed Goods and Services
Clockwork Design Group, Inc.
Clock Tower Law Group
Jill McGaffigan of Lifting Mind