[bostoncure.org] Status 4/15 - 5/13

[Art Mellor]

Boston Cure Project informal status since last reported on 4/15/03:

It's been a VERRRRY busy month...

>>> Joining Us This Month

We've had a blitz on signing people up to our Scientific Advisory
Boards this past month. Our trip to DC and NYC (see below) really paid
off. We're still in the process of collecting bios from these folks,
so we'll post them as soon as we get them.

o Scientific Advisory Board additions
  - Jorge Oksenberg, UCSF
  - Vince Macaluso, Flushing Hospital Medical Center 
  - Saud Sadiq, St. Luke's Roosevelt
  - Steven Jacobson, NIH/NINDS
  - Marie Filbin, Hunter College

o Pharma Advisory Board additions
  - David Weinstein, Gliamed

o Board of Advisors additions
  - Jill McGaffigan, Gold Wire Technology
    Jill has been helping us out with our financials since our
    inception and we decided to formally recognize her effort by
    officially adding her to our Board of Advisors, an oversight on
    our part, now corrected.

Also, this week marks our high school intern Peter Harris' last days
helping us out. Over the past several months Peter has come in every
morning and contributed to our efforts. He has been a regular
contributor to MSNews, he has laid the groundwork for a new program we
will be offering - an MS Social, begun the planning process of a more
formal high-school community service link to the Boston Cure Project,
and gotten our Public Service Announcement distributed and shown in
the local area.

>>> Cure Map

o We've posted the first two Phase 2 Genetics docs on our site with two
  more to be announced later this week. They are available on this
  page in the Cure Map section:
  http://www.bostoncure.org/default.php?nav=news&topic=documents

o We've also posted (to the same place) a spreadsheet of all the
  candidate genes for MS susceptibility that have been looked at.

o The contract for our Tissue Bank partner, Genomics Collaboritive, is
  at our lawyers getting reviewed. Once that is ok'd we can finalize
  the study protocol, informed consent form, and questionaire and get
  them in front of an Institutional Review Board for final approval.

o DC/NY Trip
  Hollie, Art, and Melissa took a road trip down to Washington DC, and
  New York City to meet with a number of researchers and other
  interested and interesting parties. On our visit we managed to see:
  - Ursula Utz, Katrina Gwinn-Hardy at the NIH
    Ursula is the program director for MS related research and Katrina
    is heading up a big genetics tissue bank project for some other
    neurological disorders
 - Stephanie Clipper, Pat Turner, Marion Emr, all from the
   NIH communications department. Their jobs involve interfacing to the
   public and to organizations like ours
 - Steve Jacobson does viral immunology at the NIH, with a focus on
   MS. He has agreed to join our SAB.
 - Saud Sadiq runs one of the most amazing MS clinics in the country
   in NYC, as well as a research lab. He has agreed to join our SAB
 - David Weinstein is the president of Gliamed, a small biotech that
   has some very interesting neuro-protective compounds under
   investigation. He has agreed to join our PAB.
 - Vince Macaluso is a hilarious neurologist with MS in NYC who is
   working on starting up a new MS Clinic. He's agreed to join our SAB.
 - We also managed to hook up with current PAB/SAB members Ayad
   Abdulahad of Berlex and Raj Ratan at his new post at the Burke
   Rehabilitation Hospital
 - We had one aborted attempt to get to the Christopher Reeve's
   Foundation in NJ, but we were thwarted by traffic to the Lincoln
   Tunnel that had us pinned for an hour.

o We've been meeting with a volunteer, Barry Coflan, to see how we
  might pull together an effort to get a standard questionair for MS
  studies created and adopted.

o Stephanie Andrews is a volunteer who has agreed to take a stab at
  moving our phase 1 nutrition effort forward.

o We've been doing a lot of reading and talking about the new HIPPA
  regulations, trying to get a handle on what they will mean with
  regards to our tissue bank. It seems that not many people really
  understand the implications yet.

>>> Fundraising

* Water Cove Charitable Foundation Matching Challenge was met! We
  managed to exceed our goal of raising $50K in match-qualified
  funds. This happend with 242 new gifts and 19 increased
  gifts. Thanks to everyone who came through for us, especially the
  Water Cove Charitable Foundation!

* The 2nd Annual Hunt for the Cure was a huge success. Details below.

* Michelle McHugh Birthday Party brought in quite a few
  contributions. She asked people to make a gift to the Boston Cure
  Project in lieu of giving her something. Thanks Michelle!

* We'll be launching the Anna Peabody Fund Raffle in the next week. We
  have the tickets (and actually began selling them at the Hunt). The
  prize is $20K in cash or an Acura RSX from Herb Connolly
  Motors. Tickets are $50 each, or 3 for $100. Chances of winning are
  1 in 1800. An additional 10 prizes of $100 will be awarded. For
  details and ticket purchases, please send mail to
  melissa at bostoncure.org 

>>> Education

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.

o Volunteer Michael Silton has been helping investigate how we can run
  CME (Continuing Medical Education) courses that would be approved
  for physicians.

>>> Community Building

Lot's of meetings with folks in the community this past month:

o Glenn Mangurian of UMass and the National SCI Association
o Alan Weinberg who runs an MS Support group in the area
o Ironstone Farm who specializes in therapeutic horseback riding
o Jim Rassmussen, Bob Carpenter of Peptimmune
o Carl Nickerson of the BI regarding the economics of MRI (it's whacky)
o Charles Guttman of the Brigham to see the amazing 3-D MRI imaging
  they are doing
o We attended and presented at Rip Kinkel's excellent talk for Biogen

In addition, the following Community Building activities have been
happening: 
o The next newsletter should be going to the printer this week
o Lisa Sargeant, Anthony O'Shea, Debbie & Art Mellor, and Melissa
  staffed a table at mile 21 of the Marathon with info on the Boston
  Cure Project. This was all arranged by Krista Milne who happens to
  live at mile 21 of the Marathon route :-)
o Art attended the 10th annual Nancy Davis Race to Erase MS event in
  LA, thanks to a ticket from Biogen. Very lavish!
o George Peabody and Krista Milne have been developing an interesting
  program called Families with MS to address the impact of MS on
  families, esp. those with children with MS.

>>> Events

o The 2nd Annual Hunt for the Cure took place last Sat 5/10 and went
  off without a hitch. We don't yet have the official numbers, but
  right now it looks like we raised $28K from teams, $5K from
  sponsors, and over $1K from the silent auction, door fee, and
  impromptu contributions. This exceeds our results from last year by
  over $10K. This event was an amazing effort from many people (the
  list as we have it is below, so let us know if you are missing from
  it). 

  Winning Teams

  Top 3 Teams for the Hunt
  1.  John Reardon's Midnight Ramblers
  2.  Mary Dyer's 'Girls on the Run'
  3.  Kathy Reardon's 'Kitty Caryalls'

  Top 3 Teams Money Raised
  Fueldogs 
  Chicks for the Cure 
  Team Tang

  Top Individuals, Money Raised
  Kevin Gulley 
  Melissa Gulley 
  Jennifer Kulm
  Ted Doyle

  The Hunt Management Team

  Lisa Sargeant		Event Director

  Kim Labow		Director of Printed Materials
  Debbie Mellor		Director of Team Recruiting
  Krista Milne		Director of Advertising
  Joanne Minassian	Director of Corporate Sponsorships
  Anthony O'Shea	Director of Registration
  Amanda Viciana	Director of Event Logistics

  Corporate Sponsors:
  Clockwork Design Group, Inc.
  CVS
  Go2 Communications, Inc.
  Gold Wire Technology, Inc.
  Minassian Associates, Inc.
  Mojo Marketing
  O'Shea Irish Golf & Sightseeing Tours
  Skelmir, LLC.
  Sun Life Financial of Wellesley, MA

>>> Volunteer Efforts

VOLUNTEER STAFF
Peter Harris - Intern
Debbie Mellor - Contributor Acquisition
Susan Mellor - Administrative Assistant

ADVISORS
Shari Agatstein
Wendy Booker
Gordon Brownlee
Sue Heilman
Jacqui McCoy
Carl Nickerson
Ernest Parizeau
Debby Wiesen

APF RAFFLE
Robert Drake
Adam Hayes
Nancy Kaplan
Charlie Namias

MAR/COM COMMITTEE
David Flannery, Jr.
Debbie Mellor
Krista Milne
Anthony O'Shea
Lisa Sargeant

MSNEWS
Brian Del Vecchio
Peter Harris

"NEWLY DIAGNOSED" BROCHURE
Dr. Maggie Harling
Cynthia King
Dr. Lisa Paine

NEWSLETTER
Maryann Boyle Murray
Margaret Doris-Pierce
Debbie Mellor
Sue Mellor
Cynthia King
Marcie Lascher
Lisa Sargeant

PERSONAL APPEAL CAMPAIGN
David Blohm
Nancy Kaplan
Fred Marx
Robin Mirollo
Jacqui McCoy
Michelle McHugh

SCAVENGER HUNT
John Copeland
Laurie
Melissa Baker
Brian Del Vecchio
Margaret Doris
David Flannery
Julie Gershon
Rose Gershon
Bryan Gildenberg
Nancy Gildenberg
Rachel Golub
Carmen Hsieh
Cindy Labow
Kim Labow
Jaime Lysik
David Mades
Harvey Mades
Linda Mades
Ruth Mades
Gail Martino
Kristina McHale
Art Mellor
Asha Mellor
Brian Mellor
Debbie Mellor
Sue Mellor
Krista Milne
Joanne Minassian
Mark Minassian
Andrew Olson
David Olson
Kari Olson
Anthony O'Shea
Chuck Potier
Fiona Reardon
Jeffy Ross Demeter
Jazmin Santiago
Lisa Sargeant
Hollie Schmidt
Andy Shein
Suresh Tiperneni
John Ufland
Ken Viciana
Amanda Viciana
Jen Wise
Matt Wise

OTHER
Stephanie Andrews (Cure Map)
Amanda Gaffey (administrative)
Peter Harris (PSA, Admin)
Bruce Manning (Sloan team advisor)
Jill McGaffigan (financials)
Debbie Mellor (various)
Sloan School Team Tiger

COMPANIES CONTRIBUTING GOODS OR SERVICES:
Clockwork Design Group, Inc. (design)
Mail Perfect, Inc. (mailing services)