| Contact
Information |
T.H.E.
BRAIN TRUST
186 Hampshire St
Cambridge, MA 02139-1320
Tel: 617-876-2002
Fax: 617-876-2332
info@braintrust.org
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Meet our volunteers
Local
Volunteers :
Andrew
Tinklepaugh, Treasurer
Atsuko Itakura - Ito, Volunteer Coordination
Clarissa Rodriguez, Office mgmt
Lawrence Wolf, Tech. advisor
Pallavi Shete, Web developer
Samantha Scolamiero, Director
Our
Albert Schweitzer Fellow:
Kevin Fairley, Graduate
Student in Nursing
MIT
Braintrust Student Group
Mariana
Recalde
Ann Punnoose
Interns
Katrina Lust, MIT Cog-science
Martine Lamy, MIT Cog-science
Online Volunteers :
Alan Bawden, Postmaster
Allie Gillies, Volunteer
Chris Owen, Web administrator
Dona Ross, Co-ordinator
Henri Neethling, BRAINTMR List
Jeannine Walston, NABTC liaison
John Barry Leonard, BRAINTMR List
Kathleen B. McCarthy,Promotion
Mary Lowe, Community leader
Matthew K. Fullerton, Marketing
Sandy Barnes, BRAINTMR List
Online Support
Facilitators :
Barbara Jacobs, CranioKids
David McCorkle,
Craniopharyngioma
Florian Kerbl, Oligodendroglioma
Jill Dombrowski, DNET
Kelli Lefebre, Bthealthykids
Ilene Lewis, Adult Ependymoma
Mary Lynn Bower, JPA
Nancy Conn-Levin, Meningioma
Sandra Norton, Btcaregivers
Toni Levinson, Dnet
Past Volunteers
Andrew
Tinklepaugh, CPA has a Master of Science degree in Accounting from
Bentley College and a BA in Economics from Clark University. He operates his own
accounting practice in Lexington, MA specializing in income tax preparation. He became
Treasurer of The Healing Exchange BRAIN TRUST after volunteering for several months. He
donates a significant amount of time to the organization. Andrew will be the first to
point out that unlike the cartoon accountant at the right he doesn't wear a tie! He says,
"I like applying my accounting experience to help a good cause and I enjoy
volunteering with pleasant people during my slow business period. I have learned from
Samanthas example how people with disabilities approach life and how they can
overcome obstacles. I appreciate that she keeps a positive attitude after what she has
been through."
Email address : Andrew@braintrust.org |
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| Pallavi Shete has a Bachelor of Science degree from Bombay
University, India. She has been working as a computer software professional for the past
four years. She is working as Web developer with The Healing Exchange BRAIN
TRUST. She says "As a volunteer, I am enjoying working with T.H.E. BRAIN TRUST
because it gives me satisfaction and fulfillment than a regular job might provide. My
computer skills are getting utilized to help people across the world having
life-threatening medical problem like brain tumor. We have many ideas about how we could
make this web-site more user friendly and we have been working towards it." |

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| Samantha Scolamiero founded
the BRAINTMR mailing list at MIT because there were not many online resources for brain
tumor patients in the early 1990s when she was diagnosed with a cyst in her brain. Also,
she found most face-to-face support groups were too disease oriented. One group would not admit her because she
didnt have cancer. Others were run more like lectures than support groups; others
were difficult to get to. Since she shares many common experiences with acquired brain
injury survivors, she founded The Healing Exchange BRAIN TRUST to serve people with a
variety of brain abnormalities. Going thru brain surgery and the aftermath is a
terrifying and bewildering experience, but there are unexpected blessings. I have met some
of the most wonderful people in the world as a result of this ordeal. Some of their faces
are on these pages. |

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| Lawrence Wolf, BS, MBA has worked professionally in the computer field
since 1992 when he graduated with a degree in computer science. Originally programming
insurance software, his technical skills evolved to include database and system
administration, as well as hardware configuration. Most recently he has moved into a
system analyst role, utilizing his technical knowledge and business skills, which he
acquired both on the job through MBA coursework. Lawrence became involved with T.H.E.
BRAIN TRUST in 1999, enhancing the database and providing technical support on an
as-needed basis. Why? "I feel that giving to the community is important,and
volunteering is a great way to do that. And everyone at BRAIN TRUST is fantastic to work
with !" |

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| Allie Gillies recently married, so with her busy
schedule working as assistant to the principal at an elementary school and "the joy
of home ownership" she volunteers online. "I encourage my friends to make
purchases via BRAIN TRUST's Amazon.com lin and it seems to be working.I began volunteering
for BRAINTMR events even before THE BRAIN TRUST was founded. I give credit for the
organization's success to my sister Samantha. She is tenacious and never gives up. Running
a non-profit organization with all volunteers seems impossible. She does it with grace
personified. If anyone deserves to have good volunteers and funding it's THE BRAIN TRUST
-- an organization that I know first hand can truely help brain tumor survivors and their
families. |

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Kathleen B. McCarthy RN is an eight-year survivor of a rare brain tumor --
dysembryoplastic neuroepithelial tumor (DNET) -- which was misdiagnosed for over fifteen
years. Kathleen uses her background in nursing to assist patients withself-advocacy. Since
her surgery in 1994 she has been unable to practice in the hospital setting, so she uses
her nursing expertise as a national patient advocate by communicating online, publishing
articles on her story and speaking publicly. Kathleen has been an active participant on
the BRAINTMR list and has effectively volunteered for T.H.E. BRAIN TRUST longer than it
has officially existed! Before nursing she studied film, theater, and public relations.
She recently finished an autobiographical screenplay, which she plans to stage to raise
awareness about brain tumors and encourage patient advocacy. She organized a comedy night
fundraiser for the BRAIN TRUST in 2001 and
says Id love to bring my play "The Rainbow's End" to Boston as
fundraiser for Braintrust.org ! |

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Mariana Recalde is a freshman at MIT, most recently from Miami, FL
but she has also lived in Cordoba, Argentina, and Budapest, Hungary. "What brings me
to T.H.E. BRAIN TRUST is my desire to become a neurosurgeon. I feel that
by being exposed to an organization like this, I can learn what it is I need to do to be
helpful, kind, and give my future
patients hope and strength." She attended the Together in Hope conference in
Tampa, FL in January 2002 after which she wrote a fantastic article about her
experience! |

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| Matthew K. Fullerton, Marketing is a fourteen-year survivor of a glioblastoma
multiforme, diagnosed in 1987, at age 17. After successful treatment at UCSF, Matthew
completed his B.B.A. in 1993.Matthew has used his diagnosis to help other patients;
facilitate a support group; write a resource guide; & advocate for other survivors. A
member of the BRAINTMR list since 1995, Matthew has most recently focused his efforts on
using his marketing expertise to help raise funds for THE BRAIN TRUST. It is
sometimes more difficult to be a survivor than a patientas a patient you know what
is expected of you; people know how to behave/interact with you; society has a system
established for treating illness. Survivors, on the other hand, have challenges for which
society is just beginning to build protocol
I am convinced that the BRAIN TRUST, is
the grass roots organization working towards addressing the unique issues brain tumor
survivors face. |

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| Ann Punnoose is an MIT student majoring in Brain and Cognitive
Sciences. She has been involved with Neuroscience research since high school and now wants
to see how the research benefits people directly. As a new volunteer at The Brain Trust,
Ann has already learned a great deal about the lives that people who deal with brain
injuries lead. She looks forward to learning more and volunteering with people. In her free time, Ann reads novels,
and tries to learn new languages. She loves to smile. ;) |

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Nancy Conn-Levin M. A. is Health Educator specializing in stress
management. She has been providing education, support and coping techniques for brain
tumor survivors since her own craniotomy for a brain tumor in 1996. Volunteering for
T.H.E. BRAIN TRUST is particularly important to me because it is a unique charitable
organization. As far as I know, no other has a staff comprised entirely of volunteers who
promote information, support, education and other helpful resources for survivors of brain
tumors, brain injury or other brain disorders and their family members. I've enjoyed
meeting other BRAIN TRUST volunteers at brain tumor conferences and other events in
different parts of the United States. I am constantly amazed at the ways we can reach out
and help thousands of people around the world through online support.
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| Mary Lynn Bower has two
master's degrees in medicinal chemistry and business administration/finance. She has a son
in college and a husband of 31 years! She also has quite a brain tumor experience.
I had a juvenile pilocytic astrocytoma (jpa, grade I) in the vermis of the cerebellum resected in April 1993. I had a
stroke about 6 weeks later, but after acupuncture, OT, PT, and lots of time, I got better.
I still have deficits, but they do not keep me from enjoying life. I volunteer in my
community, most recently as an elected school board member, as well as for T.H.E. BRAIN
TRUST and other groups. Thanks to the BRAINTMR list, I have learned so much and been able
to pass
the knowledge on and help others. It is a good reason for living!" |

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| John Barry Leonard, Jr. was born and raised in Ashland VA and continues to
have many avocations! He's been a Part-time Radio Announcer, WYRN,Louisburg, NC, in the US
Air Force (F-111A Simulator) a Truck Driver and Cable TV Engineer, even a licensed private
pilot from 1981-1990! He says "My brain tumor was found accidentally in '90 during my
pilot's medical exam." He had surgery for a Subependymoma in 1990, St. Anthony Hosp,
Rockford, IL with five weeks of rehab. Presently working part-time in DeKalb Co., IL
Emergency Management, he got his Technician Class Amateur Radio License in 1993, (callsign
W9JBL), and is now an Amateur Extra Class. He Joined BRAINTMR in its earliest days and
became a "List co-owner" to assist with administrative tasks. He's one of our
most loyal volunteers! He's been married to his wife Nancy since 1985 and has three
stepkids and two granddaughters. |

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| Ilene Lewis: After only 4 weeks of symptoms Ilene's husband,
David was diagnosed with a brain tumor. Since then he has had two surgeries, chemo,
radiation, cognitive rehabilitation and many complications. She writes, "Having no
specific knowledge about brain tumors, much less an Ependymoma, I began my search to
always stay "two steps ahead of this beast". After joining the BRAINTMR group,
she was unable to find others with same tumor. "T.H.E. BRAIN TRUST was kind enough to
support me in starting up a special group for Adults with Ependymomas. As a caregiver, I
feel our group has become a wonderful sounding board and "safety net" for all
our own emotions, questions and fears. I am very excited about our new website" |
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| Carol Welsh BA, MBA and brain tumor survivor is the energetic historian
and the webmaster of our Adult Ependymoma
Support Group. Her goal with this position is to spread information to survivors,
caregivers and healthcare providers. She says, " Recovery is a life-long adventure -
I'd like to capitalize on my experience and share it with others like me." She is
also working on a comprehensive case study which highlights the often-overlooked side of
life-saving brain surgery - the rehabilitation and ultimate adaptation to post-operative
deficits. Read more about her on her group's members page |

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| Mary Lowe, Community leader |

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| Sandy Barnes, BRAINTMR List |

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Atsuko Itakura Atsuko came to volunteer at T.H.E.
BRAIN TRUST because she wanted to
contribute her experience and skills from her job in Japan as senior staff in Human
Resources at the Japanese headquarters of a major American investment bank. She also
wanted to improve her English, learn new skills, and find out about work environments in
Boston. She found that this is no typical office job! "Every day I come here I have a
special experience. There are many interesting coincidences. And it's fun!" Her first
name "Atsuko" means "warm-hearted" and it's so true! We are definitely
blessed with her presence. We're excited about her new role as Volunteer Coordinator. I'm
sure all our volunteers will enjoy working with her, in person and online! |

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| Martine Lamy is a junior at MIT
studying Brain and Cognitive Sciences. She has participated in a variety of brain research
including the effects of frontal lobe injuries, and how memory works. "After MIT, I
hope to enter a M.D./Ph.D. program and study neuroscience and neurology." She one day
hopes to engage in clinical research to help people with brain disorders, and to figure
out the mysteries of the brain. Her work at the brain trust is giving her a new
understanding of how our brains work, and is giving her more motivation to continue in
this field of study. In her spare time, Martine enjoys playing with her quaker parrot,
Jasmine, reading, and dancing. |
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