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Chordoma
Foundation Newsletter
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Second International Chordoma Research Workshop Forges
New Progress
 From April
3-5 2008, just eleven months after the first International Chordoma
Research Workshop (ICRW) the Chordoma Foundation co-hosted a longer,
larger, and more in-depth second ICRW in partnership with the National
Cancer Institute and the NIH Office of Rare Diseases. The number of
physicians and scientists who attended the second ICRW increased by
50%, further expanding the emerging field of chordoma research, and
sparking dozens of new collaborations between researchers across
disciplines and institutions.
In the short time between the two workshops a staggering amount of
progress was made towards identifying the molecular and genetic basis
of chordoma. Many of the questions raised by participants at the first
ICRW were answered, and many new questions, ideas, and theories
emerged. Importantly, several research groups independently confirmed
findings that may open new doors for research and potential treatment
options. In addition the Research Roadmap developed at the first ICRW
was re-evaluated and updated to reflect the latest scientific
developments, such as the discovery of chordoma-precursor cells in
mice, which may unlock the possibility of creating a genetic mouse
model of chordoma.
This workshop was made possible in part by generous contributions from
the University of Pittsburgh Dept. of Neurological Surgery;
Massachusetts General Hospital Dept. of Orthopedic Surgery; Dr.
Chandranath Sen, Chairman of the Dept of Neurosurgey at St
Lukes-Roosevelt Hospital; and Synthes Spine.
Visit the Research
Workshops Page on our website for detailed
information about the workshop, plus pictures, agenda, speaker bios,
and scientific reports.
First Chordoma
Community Conference
From April 4-5, the Chordoma
Foundation brought together 120 patients, family members, and
caregivers for the First Chordoma Community Conference. This first-ever
community gathering was an opportunity for members of the chordoma
community to build supportive relationships and to begin working hand
in hand with researchers to find a cure. For many participants it was
the first time to connect with others dealing with chordoma, and for
some it offered a first chance to meet face-to-face with friends they
had cultivated online.
The conference included motivational speeches, presentations on topics
ranging from health insurance to pain management, and an "Ask the
Experts" session with eight chordoma physicians and researchers
who presented the latest information from the Chordoma Research
Workshop.
In parallel to the CCC, there was also a special youth conference
organized by Carolyn's Compassionate Children, which kicked off a new
Chordoma Youth Network. Along with Carolyn the youth conference was
facilitated by pediatric brain cancer survivors Caleb Scoville and Alex
Oden.
The incredible research progress of the past year has proven that by
working together towards a common goal researchers are more productive
than they could possibly be working alone. The same is true of the
patient community; together, we are stronger than the sum of our parts.
That so many traveled to Bethesda is a testament to the strength and
determination of chordoma patients and their families. Every single one
of us hopes, prays, and dreams for a cure to this terrible disease.
Now, working together, we finally have the power to turn our dreams
into reality.
Visit the Community Conference
Page on our website for a conference summary, pictures, agenda, and
speaker talks. Video of the conference will be available soon!
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Launch of New Cell Line Panel
 Cell lines are live tumor cells grown perpetually in a
laboratory that are used to model the behavior of human tumors. They
are a critically important tool for modern cancer research because they
allow scientists to test drugs on live cancer cells and observe the
biological processes that cause them to grow.
Until now, limited access to valid chordoma cell lines has been a major
road block for chordoma research. Overcoming this obstacle is
absolutely necessary for the development of new treatments to proceed,
and will exponentially accelerate the pace of discovery - it is
therefore our highest priority.
The Chordoma
Foundation Cell Line Panel will provide
researchers with one-stop easy access to validated chordoma cell lines.
Enabling all researchers to study the same set of high-quality cell
lines will make the entire field of chordoma research more efficient
and effective. Data generated on each cell line will be aggregated in a
centralized database, allowing results from the same cell line in
multiple labs to be directly compared.
Already, we have distributed the worlds only confirmed chordoma cell
line, U-CH1, to over 15 research labs, and have begun analyzing new
chordoma cell lines which should be added to the panel soon. Within in
the next 18 months we aim to expand the panel to include at least ten
well-characterized and validated chordoma cell lines, each of which
faithfully represents the biology of the tumor from which it was
derived.
To
promote the development of new cell lines we solicited grant
applications from leading researchers experienced at creating
high-quality cell lines. In addition we will award a $5,000 prize for
each new chordoma cell line that is included in the panel. As new cell
lines are developed, these investments will pay off many times over.
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Our First Research Grants
In June we released our first request for grant applications aimed at developing
and characterizing much-needed models of chordoma such as cell lines,
xenographs (human tumors implanted in mice), and transgenic mouse
models (mice genetically engineered to develop chordomas). Gaining
access to these model systems will enable chordoma researchers to more
effectively compete for grants from the National Institute of Health,
and will quickly multiply their research capabilities.
We are very happy to have received nine outstanding applications from researchers
in five countries. These grants are currently being reviewed by a
committee of experts from Harvard, Vanderbilt, and Duke, enabling us to
invest in the most cutting-edge and worthwhile projects. We are very
fortunate to be mentored in this first grant review cycle by Dr. Bill
Phelps, Director of the Translational and Preclinical Cancer Research
Grants Program at the American Cancer Society. Grants will be awarded
by November 15th - we anticipate being able to fund at least 3 of these
9 projects. You can help us fund more by donating now.
At least one $25,000 grant will be funded with money raised through the
Justin Straus Perseverance Fund, and another will be funded by the Lauren
Richmond Chordoma Research Fund. A third grant will be funded by an
anonymous donor who matched gifts made in Justin's honor. We are deeply
thankful to these young chordoma champions and their families for
supporting this critical research.
Additionally, we are proud to announce that along with the Liddy
Shriver Sarcoma Initiative we have co-funded a $25,500 research grant
to Dr. Brian Harfe at the University of Florida to attempt to create a
genetic mouse model of chordoma. We are very thankful to the Liddy
Shriver Sarcoma Initiative for their strong support of chordoma
research, and plan to co-fund additional projects together in the
future. Read more about Dr. Harfe's exciting project!
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New Research Scientist
 On August 1, 2008, with the support of the Chordoma Foundation, David
Alcorta, PhD brought his 25 years of experience in molecular biology
and cancer research to the lab of leading chordoma researcher, Dr.
Michael Kelley at Duke University. Formerly an assistant professor at
the University of North Carolina at Chapel Hill, Dr. Alcorta will now
manage the newly-formed Chordoma Foundation Cell Line Panel, and will
be the go-to person to coordinate a multidisciplinary chordoma research
effort at Duke.
The Chordoma Foundation is pleased to partially support Dr. Alcorta
through a one-year $45,000 grant, and $15,000 in donations earned by Team
Chordoma Champions at the Duke Big Event in June.
The addition of Dr. Alcorta is expected to rapidly accelerate chordoma
research at Duke and beyond by facilitating collaboration and sharing
of resources among various labs at Duke and around the world.
In his role as manager of the Chordoma Foundation Cell Line Panel, Dr.
Alcorta will collect cell lines from across the globe, and perform a
series of in-depth analyses to characterize the molecular and genetic
signatures of each cell line. Once cell lines are accepted into the
Cell Line Panel, Dr. Alcorta will distribute these cell lines to
researchers who request them. Dr. Alcorta will also work with a network
of scientists across the world to optimize techniques and methods for
establishing and growing chordoma cell lines.
Dr. Alcorta now joins only a handful of full-time chordoma researchers
throughout the world. He is fully committed to curing chordoma and has
actively participated in numerous chordoma foundation activities. He
has a positive attitude, is a pleasure to work with, and is always
eager to collaborate. We are confident that he will be a great asset to
the entire chordoma research community.
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Chordoma Foundation Receives Prestigious Social
Entrepreneurship Award
Chordoma
Foundation co-founder Josh Sommer was recently selected as one of
twenty 2008 Echoing Green Fellows
from a pool of over 1400 organizations. Since 1987, Echoing Green has
supported nearly 450 organizations with bold ideas for social change
such as Teach For America. Over the next two years Echoing Green will
provide the Chordoma Foundation with $30,000 per year in seed funding
and additional technical assistance, including pro-bono legal support
and organizational development consulting.
This highly competitive award is a signal that some of the worlds
brightest entrepreneurs from the business and nonprofit sectors believe
in the Chordoma Foundation's innovative big-picture approach to
accelerating research for a neglected cancer like chordoma. Lots of
people are paying attention - now it's our turn to show the world that
we can Chordoma is no match for innovation and determination. Join
Echoing Green in supporting our mission by donating today!
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New Additions to the Team
 We
are very happy that Bruce Nelson, CPA, MBA,
of Clifton, New Jersey has joined the Chordoma Foundation Board of
Directors as treasurer, bringing vast accounting and financial
management experience to the foundation.
Bruce is a certified public accountant with an MBA in Finance and who
has more than fifteen years experience in accounting and financial
management.
Bruce is the father of chordoma survivor, Johnny Nelson who was
diagnosed with a clival chordoma in 2004 during his freshman year at
the University of Maryland. Shortly after his diagnosis, Johnny and his
parents started the Chordoma Research Foundation which raised over
$130,000. Once the Chordoma Foundation received 501(c)3 nonprofit
status in October, 2007 the Nelson's joined forces with the Chordoma
Foundation, donating the money they had raised to the foundation. Since
then the entire Nelson family has been actively involved with the
Chordoma Foundation.
In addition, we are very pleased to welcome Lynette Nelson to the team
as Community Outreach Coordinator. In this volunteer position, Lynette
will assist chordoma patients, and other constituents with finding
information, answering questions, connecting with other patients and
agencies for support, and getting in touch with the most experienced
doctors. You can contact Lynette at .
Meanwhile Johnny Nelson has been working full-time over the past
several months to develop a new set of online tools to help empower
Chordoma Champions to become more effective fundraisers. This exciting
new software should launch within the next two weeks so check back soon
for more information.
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Profiles in Courage
 As everyone who
has been affected by chordoma knows, it is a disease that requires much
courage to endure. To shed light on the true, unfiltered experience of
chordoma patients and their families, we have created a new series on
our website called Profiles in Courage.
Each month we will post a powerful new story about an individual who
has fought courageously against this monstrous disease. We encourage
you to read the first Profile: a candid
interview with Kerry Underhill, widow of Pro-skateboarder Ray
Underhill.
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Get Involved
 In the coming months we will award new grants, open the
Chordoma Foundation BioBank, and embark on the most massive and cutting
edge chordoma research project in history in an attempt to uncover the
molecular-genetic underpinnings of the disease. Accomplishing these
ambitious goals will require approximately $1.5 million by the end of
2008. Thanks to the incredible support of many in the chordoma
community we are half-way towards this goal. We depend heavily on
grassroots fundraisers, so now more than ever we need everyone to
invest in a cure by joining the fundraising effort. Here are a few ways
you can help:
- Create a Champions Page - the
simplest and most effective way to raise money from your friends
and family. Log in now, add your story, set a fundraising target,
get a unique link like justin.chordomafoundation.org, and share it
with everyone you know. $50 from 50 people quickly adds up to $2,500.
- Hold a
Fundraiser - a fun way to celebrate with friends
wile raising major dollars for chordoma research. Just think; in
one day you could raise $25,000 - enough to fund a seed grant to
jumpstart the work of a new chordoma researcher, or to develop one
new chordoma cell line! We are incredibly grateful to Champions
who have held fundraisers on our behalf. If you're interested in
hosting an event send an email to
- Shop For A Cure - now
you can raise money for chordoma research just by shopping online
with Amazon.com! Start your shopping from our website to earn up
to 10% back for the Chordoma Foundation - it's that simple. Share
this email with a friend to spread the word!
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