[bostoncure.org] Status 6/18 - 7/16

[Art Mellor]

Boston Cure Project informal status since last reported on 6/18/02:

Another action packed month has zipped by at the Boston Cure
Project. Lot's of stuff to report and plenty in the works.

>>> Joining Us This Month
o David Blohm has joined our Board of Directors, his bio is here:
  http://www.bostoncure.org/default.php?nav=bcp&topic=people&bio=DavidBlohm
  We're very excited to have someone with his experience helping us
  out!

o Dr. Peter Riskind has joined our Scientific Advisory Board. His bio
  is in the works and should be on our web site in the coming
  weeks. He has extensive experience in clinical and research
  activities involving MS.

o Due to full-time job work constraints the following people have had to
  reduce their time commitments to the Boston Cure Project and give up
  their official capacities:

  Debbie Burrage - Volunteer Coordinator
  Peter Mellor - Board of Directors

>>> Cure Map

Work on the Cure Map is proceeding. The pathogens phase 1 document has
only one reviewer's comments left before being posted. Hollie has
begun work on phase 2 (reviewing the literature) for the genetics
document and has a straw-man structure for the nutrition phase 1
document in place.

Hollie, Tim, and I have been discussing an exciting new strategy to
implementation of phase 4 (experiments) of the Cure Map. We're in the
process of writing up an overview to be announced and posted soon.

In order to validate our new concept we have been meeting with some
geneticists to get their thoughts on it. So far we have gotten great
feedback from David Simon (of our SAB), Mark Daley and Trey Ideker at
the Whitehead, and Martin Pollack at Brigham and Women's. 

We've also met with some potential partners and advisors who are
involved in collecting and analyzing large amounts of health related
data - Caroline Conte of the BU Black Women's Study, Michael
McManus of AnVil, and Seth Hollander who has been researching the
genotyping space.

>>> Education

The MSNews site is continuing to draw new readers. We really need to
get people making comments - don't be afraid, you can even comment
anonymously. Check it out at http://msnews.bostoncure.org

Our HBS intern, Stacy, is making headway on her project. She is
writing a detailed document on the health care system and how it
applies to MS. She's uncovering lots of eye-opening things. It should
be available at the end of the summer.

Our second newsletter is off to the printer. It will be mailed and
posted to the web shortly - we'll send out an announcement at that
time. 

Allitia's much awaited MS101 document (and accompanying slide
presentation) is in the final round of edits. An announcement of
availability will be made when it is posted.

Hollie is heading up our next educational effort - a brochure for the
newly diagnosed. Maggie Harling, Lisa Paine, and Cynthia King are
helping out. It's in the early planning stage, but you'll be hearing
more from us as we seek your participation in our information
gathering. 

>>> Community Building

We've been meeting with many people over the past month. I attended
a Teva reception for neurologists thanks to an invitation from Mark
Spencer (a Teva Rep). I got to meet Dr. Michael Racke of UT
Southwestern in Texas, Dr. Ken Johnson of UMd, and Rivka Riven
Kreitman (VP Innovative R&D of Teva). These are all people we feel are
important to get working with us as we move forward.

Jamie Heywood of the ALS Therapy Development Foundation continues to
be a source of mentoring and ideas. I met with him recently to discuss
how to launch Family Funds, basically family branded funds within the
Boston Cure Project that are raised by volunteers. We've started the
process of launching our first one. If you would be interested in
doing something similar with your own family or friends, let me know. 

We had a good meeting with a number of Board Members of the NE Chapter
of the NMSS. Arlyn White (President) and Linda Guiod (VP) arranged for
us to meet with the following folks:
  Bill Keough - Chairman
  Woody Chittick - Vice Chair
  Eli Lipcon - Research Advocate
  Richard Slifka - ex Chair
  Howard Weiner - B&W Hospital and MS Center
We explained our approach and discussed ways that we could work
together and avoid stepping on each other's toes. We've agreed to stay
in touch and try working together where it makes sense.

I met with Mary Woolley, the President of Research!America
(http://www.researchamerica.org). They are the largest nonprofit
advocate of medical and health research in the US.

Volunteer Anne Reed put us in touch with Marty Cohen, president of the
Metrowest Community Health Foundation (http://www.mchcf.org), who gave
us some great pointers on grant writing.

And in the "feel good" corner, we had someone locate us on the web who
had a brand new electric wheel chair, left by a relative, to
donate. We managed to find a great home for it via one of our
volunteers. 

>>> Events

SAVE THE DATE: Volunteers Kim Labow and Debbie Mellor are organizing
a Scavenger Hunt fundraiser for October 5th. Details to go out
soon. It's an all day, fun-filled, team-based event.

>>> Fundraising

We continue to get all of our support from individuals, although we
have begun soliciting some grants. I've had several people comment
that they haven't contributed only because the amount they could give
would not be significant. Let me assure you that all amounts are
significant. Every dollar you provide is a dollar we don't have to
raise. At our size we can see a significant impact at any
level. Please, don't feel we only need large contributions!
http://www.bostoncure.org/default.php?nav=involved

We have a volunteer family who is going to help us debug the process
of setting up a Family Fund for the Boston Cure Project. What this
entails is deciding that you'd like to raise money to support the
Boston Cure Project in the name of someone who has been diagnosed with
MS. We set up a web site for you, and a dba so checks can be written
to the fund by name. Then you do your stuff raising money from your
family and friends, etc. We'll support you with advice and
materials. All money (not needed to reimburse expenses) goes to the
fund in the name of the person chosen to support the Boston Cure
Project. Fund goals can be from $1,000 to $1M - if you are interested
please let me know.

We will be initiating a fundraising partnership with my friend Tom
Blackadar's company - Fitsense (http://www.fitsense.com). He came to
me with a number of ideas to leverage the customer base of runners and
walkers he has who use his amazing human speedometer. We'll send out
more details as the plan develops.

Lisa Harwell raised $1000 for the Boston Cure Project via her chapter
of the Fraternal Order of Eagles - thank you Lisa!

Volunteer Ronda Jacobsen has been helping me out with tips on
fundraising based on her career in the field.

>>> Volunteer Efforts Not Mentioned Elsewhere 
o Web Update project is on temporary hold while Thersa Hahn tends to
  family business for the summer. 
o Margaret Doris informed me the Clinical Trials document writing is
  starting back up again
o Debbie Mellor, David Baker, Shari Agatstein, Susan Mellor and others
  have been helping in "Operation Missing Link" - an effort to get us
  linked to has many MS sites as possible. If you'd be interested in
  helping, send an email to debbie at bostoncure.org
o Glen Glater has continued his efforts to procure free equipment for
  us, landing us 2 more hubs from Netgear
o Jill McGaffigan and Michael Gonnerman regularly contribute with
  pulling together our financials
o Debbie Mellor continues a personal fundraising campaign to raise
  money for the Boston Cure Project


-- 
...............................................................................
    Art Mellor     : HTTP> http://www.bostoncure.org : Boston Cure Project
art at bostoncure.org :       * Donate Online *         : for Multiple Sclerosis
Cell> 617/899-2360 : Main> 781/788-0880              : Fax> 781/788-8118

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