Chordoma Foundation http://www.chordomafoundation.org Tue, 26 Jan 2016 17:17:58 +0000 en-US hourly 1 Long-Time Goal Achieved with 10th Valid Chordoma Cell Line http://www.chordomafoundation.org/latest-updates/long-time-goal-achieved-10th-valid-chordoma-cell-line/ Wed, 13 Jan 2016 17:06:53 +0000 http://www.chordomafoundation.org/?p=9668 By Josh Sommer, Executive Director I’m pleased to announce that we have surpassed our longstanding goal of obtaining 10 valid chordoma … Continue reading

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By Josh Sommer, Executive Director

I’m pleased to announce that we have surpassed our longstanding goal of obtaining 10 valid chordoma cell lines for use by the research community. Having these cell lines eliminates one of the primary barriers that has held back chordoma research and treatment development for years, and opens the door to countless new research possibilities.

Cell lines are critical for a wide variety of experiments needed to understand how cancer works and identify ways to treat it. A cell line is a continually-dividing family of cells derived from a tumor and grown in perpetuity in Petri dishes (the word “line” refers to multiple generations of progeny, as in the term “bloodline”). Each cell line is derived from cells in a single individual’s tumor. By performing experiments in multiple cell lines derived from different patients’ tumors, researchers can draw conclusions that are generalizable to larger groups of patients.

When the Chordoma Foundation started, there was only one valid chordoma cell line for researchers to work with. Several other cell lines that were labeled as chordoma turned out not to be. I discovered this the hard way while attempting to use these misidentified lines in experiments when I was studying chordoma in a research lab at Duke University (along with colleagues at the University of Ulm in Germany we later published a paper proving that four alleged chordoma cell lines were invalid, thus putting an end to their use).

Having only one valid cell line to work with was a major impediment to research. It meant that experiments could not be replicated. Conclusions could not be drawn from data that was generated. Results were not significant enough to get published. Researchers had no hope of getting funding to study chordoma.

Thus, one of the Foundation’s first and most important goals was to overcome this barrier by developing a collection of validated chordoma cell lines that would be easily accessible to the chordoma research community. We set an ambitious goal of acquiring 10 cell lines—a tall order considering only one lab had ever succeeded in creating a valid chordoma cell line. The cell lines in this collection would be representative of the many clinical manifestations of the disease (e.g. primary and recurrent; skull base, spinal and sacral tumors) so that results would be relevant to the entire chordoma patient population.

At first, the Foundation funded several labs to develop new cell lines, but none of the attempts were successful. In 2010, we tried a different approach to get more researchers to try their hand at developing chordoma cell lines. Inspired by the X Prize and Prize for Life—an organization that uses prizes to advance ALS research—we began offering a $10,000 prize to any researcher who created a bona fide chordoma cell line. The cell lines have to meet rigorous validation criteria and the creators must make the lines freely available to the research community through the Foundation’s Cell Line Repository.

In 2011, the Foundation awarded the first prize to a research group at the University of Ulm in Germany that had also developed the first valid chordoma cell line. The next year, a team at the Medical University of Graz in Austria succeeded. Then researchers at Johns Hopkins and the University of Michigan followed suit. And, in 2015 we validated a record six new cell lines, bringing the total to 12, and surpassing our original goal of 10 validated cell lines.

But we’re not stopping here. At the recommendation of our Scientific Advisory Board, we have decided to continue offering additional prizes to help increase the diversity of available chordoma cell lines and ensure that every patient subgroup is adequately represented. In particular, we need to acquire additional cell lines derived from skull base and mobile spine tumors, as well as pediatric chordomas, all of which are currently underrepresented in or absent from the collection. We are already in the process of validating several additional cell lines and we aim to acquire a total of six new lines in 2016.

We are also eager to share what we’ve learned from running the cell line prizes with others facing a similar challenge. To that end, we are advising the Rare Cancer Research Foundation, which has recently begun offering cell line prizes on behalf of several rare cancers. Additionally, in November, I moderated a panel discussion about the use of prizes to spur medical innovation at the Partnering for Cures annual meeting in New York (watch video).

If you are interested in learning more about our Cell Line Repository or Cell Line Prize, please contact our manager of research, Patty Cogswell, at patty@chordoma.org.

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2015 Year End Update http://www.chordomafoundation.org/latest-updates/2015-year-end-update/ Mon, 21 Dec 2015 13:05:49 +0000 http://www.chordomafoundation.org/?p=9466 Better treatments. Better medical care. A better experience for chordoma patients and their families. In 2015, your support made encouraging … Continue reading

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Better treatments. Better medical care. A better experience for chordoma patients and their families.

In 2015, your support made encouraging progress possible on each of these fronts. Through new and enhanced Patient Services, we are now offering those affected by chordoma a place to turn for comprehensive information, guidance, and support throughout their journey with the disease. With new Healthcare Improvement initiatives, we are helping to raise the standard of care doctors provide to chordoma patients. Eight years of strategic investments in Research are paying off with a wave of promising new treatments moving toward clinical trials.

As the year draws to a close, we are excited to share this update on progress in each of the Foundation’s three program areas, as well as a preview of what’s ahead.


Download 2015 Year End Update


Here are some of this year’s notable accomplishments by the numbers:

1 clinical trial launched

We worked with investigators at the National Cancer Institute to launch a clinical trial testing whether a therapeutic vaccine called GI-6301 can improve the effectiveness of radiation for controlling tumor progression for patients with inoperable or partially resected tumors.

2 PDX models banked

We inaugurated the first and only repository of chordoma patient derived xenograft (PDX) models – critical tools needed to evaluate new drugs for chordoma. Now we have two models banked and available for use by the research community.

3 Community Conferences hosted

We brought together over 220 chordoma patients and family members for educational conferences in Los Angeles, New York, and Milan.

4 cell lines made available

Through our partnership with ATCC – the worlds largest and most reputable cell line repository – researchers anywhere in the world can now easily access four validated chordoma cell lines. We also validated six new cell lines, which will be available at ATCC in the next year. This brings the number of validated cell lines to 12, surpassing our initial goal of 10 set in 2008.

5 drugs tested in mouse models

We launched our Drug Screening Pipeline – a new program that enables us to quickly and efficiently test drugs from any lab or company in preclinical models of chordoma. This year, we completed testing of the first five drugs, four of which showed significant antitumor activity in xenograft models.

7 papers published

Research supported by the Foundation resulted in seven new publications this year, bringing the total number of papers made possible by the Foundation to 32.

10 MAB members

We welcomed our 10th Medical Advisory Board (MAB) member, Prof. Hans Gelderblom, a medical oncologist and chair of the department of medical oncology at Leiden University Medical Center (LUMC) in the Netherlands.

13 active grants

Through new and ongoing grants, we invested in 13 projects to develop a genetically engineered mouse model of chordoma, discover new vulnerabilities in chordoma, develop therapies targeting brachyury, and test promising drugs in preclinical models.

18 clinical trial concepts reviewed

In an important step towards our goal of initiating 10 clinical trials by 2020, we invited the global chordoma research community to propose ideas for therapies to test in clinical trials. Our MAB and SAB reviewed 18 trial concepts from researchers in seven countries, and identified three for which there is strong evidence to warrant the Foundation’s support. This was more than twice as many concepts as we expected to receive, a sign of how much has been learned about chordoma and how much enthusiasm there is among oncologists to explore new treatment options for their chordoma patients.

30 patients donated tumor tissue

While undergoing surgery, 30 patients contributed their tumor tissue to research through our Tumor Donation Program.

37 labs received chordoma cell lines

This year, through our Cell Line Repository, we distributed chordoma cell lines to 37 labs, enabling a wide variety of experiments aimed at identifying new therapeutic targets and evaluating new therapies. In total we have now distributed cell lines to 92 labs.

45 humanized mice created

We supported Dr. Michael Lim at Johns Hopkins University to develop of the first “humanized” chordoma xenograft mouse model. These mice are populated with a human immune system, which enables them to serve as models for evaluating immune therapies – one of the most promising emerging areas of cancer treatment. Over the course of the year, we supplied the Lim Lab with 45 of these humanized mice for in-vivo drug testing experiments.

68 physicians convened

In November 2015, we brought together experts from the US, Europe, and Japan in Milan, Italy to come to agreement about how to treat patients with recurrent chordoma. Fifteen centers presented unpublished data and the group worked together to produce a draft of a consensus statement.

106 Doctor Directory profiles

We updated and re-vetted the profiles in our Doctor Directory based on new criteria recommended by our Medical Advisory Board. In addition, we upgraded the technology that powers the directory to improve the user experience and make it easier to keep records up to date. We have accumulated a list of another 80 doctors in the US and abroad that we are currently working to vet and add to the directory.

278 patients assisted

We launched a new Patient Navigation Service to provide one-on-one support and guidance to patients and families dealing with chordoma. Since starting this service earlier this year, we have served 278 patients facing chordoma in 37 countries, providing referrals to qualified doctors, information about treatment options and clinical trials, and assistance in finding local resources to help with travel and accommodations.

1,000+ conference live-stream viewers

Our Community Conferences in New York and Los Angeles were live-streamed to viewers across the world. The video is now available on the Chordoma Foundation’s YouTube channel.

2,160 donations and counting …

We are so grateful to all of the patients, family members, friends, and philanthropists whose contributions this year have made remarkable progress possible. Thank you for joining with us to improve the lives of those affected by chordoma and lead the search for a cure!

The family of a 17-year chordoma survivor has generously offered to match donations up to $150,000 to support upcoming clinical trials. If you have not already made your year-end gift, please consider donating now to have your gift doubled!

Donate Now, Have Your Gift Matched

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Remembering Hans Keulen http://www.chordomafoundation.org/latest-updates/remembering-hans-keulen/ Mon, 02 Nov 2015 18:16:37 +0000 http://www.chordomafoundation.org/?p=9273 We are deeply saddened by the loss of our Board member and European Liaison, Hans Keulen, who passed away this … Continue reading

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Hans Keulen Hans Keulen

We are deeply saddened by the loss of our Board member and European Liaison, Hans Keulen, who passed away this week after a six-year battle with chordoma.

A native of the Netherlands, Hans was the driving force behind the Foundation’s work in Europe. For the past four years, he worked tirelessly helping dozens of chordoma patients find appropriate care and organizing the European medical community to collaborate on research and improve the care provided to chordoma patients. Perhaps most notably, Hans instigated the development of the first consensus guidelines for the treatment of chordoma, which were published earlier this year – an important step towards improving and standardizing the care that patients receive. Thanks to his efforts, Hans became one of the most well-known and respected voices in the European patient advocacy community, and, in recent years, he played a major role in bringing the needs of rare cancer patients to the attention of the medical community and policy makers in Europe.

All of us at the Foundation are in awe of what he was able to accomplish even while being in poor health. He is truly the embodiment of perseverance and was an extraordinarily capable champion on behalf of our cause. Though he will be sorely missed, his efforts have set in motion a movement among the European physicians community that will continue. And he has inspired the Foundation to fully embrace his important efforts to serve the chordoma community and improve the care that is delivered to chordoma patients in Europe and beyond.

Above all, we are grateful to Hans for inspiring us with his constant drive, his optimism, his cheer, and his infectious smile. We must, and we will, continue to persevere in his honor.

For more about Hans see his Champion Profile.

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New Programs Support Chordoma Clinical Trials http://www.chordomafoundation.org/latest-updates/new-programs-support-chordoma-clinical-trials/ Mon, 25 May 2015 15:15:36 +0000 http://www.chordomafoundation.org/?p=8863 In recent years, a substantial body of knowledge has been generated about chordoma, which provides compelling rationale for testing new … Continue reading

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In recent years, a substantial body of knowledge has been generated about chordoma, which provides compelling rationale for testing new therapies for chordoma patients. This data is summarized in our Target Dashboard. To help enable rapid evaluation of promising treatment approaches, we are now offering support for well-justified proof of concept clinical trials through:

  • Patient outreach
  • Education of referring physicians
  • Trial site recruitment
  • Grant funding

The Foundation’s Medical and Scientific Advisory Boards will evaluate trial concepts and identify those with the strongest scientific rationale and clinical relevance. We will then work collaboratively with investigators and companies to design and initiate those trials.

To qualify for support, a trial must be based on strong mechanistic rationale, demonstrated preclinical activity, and/or documented anecdotal clinical responses. Additionally, the therapy and trial design must be appropriate for the chordoma patient population.

The first trial concept review will take place on July 10th, 2015. Letters of intent are due June 22nd (download a LOI template here). Additional review cycles will be held periodically thereafter.

Please contact Josh Sommer (josh@chordoma.org) with questions or for more information.

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New clinical trial tests therapeutic vaccine to improve the effectiveness of radiation for chordoma patients http://www.chordomafoundation.org/latest-updates/new-clinical-trial-tests-therapeutic-vaccine-improve-effectiveness-radiation-chordoma-patients/ Tue, 21 Apr 2015 19:56:19 +0000 http://www.chordomafoundation.org/?p=8808 Chordoma patients planning to have radiation therapy have a new treatment option to consider that is intended to improve the … Continue reading

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Chordoma patients planning to have radiation therapy have a new treatment option to consider that is intended to improve the effectiveness of radiation.

Researchers at the National Cancer Institute are now recruiting chordoma patients planning to have radiation in the near future to participate in a Phase 2 clinical trial testing whether a new therapeutic vaccine, called GI-6301, given in combination with radiation is more effective than radiation alone. The trial is designed specifically for chordoma patients who are at high risk of tumor regrowth following radiation, including:

  • Patients who have residual tumor remaining after surgery
  • Newly diagnosed patients who are unable to have surgery
  • Patients who have a local recurrence following previous surgery

The vaccine, called GI-6301, is designed to stimulate a patient’s immune system to seek out and destroy cancer cells that contain a protein called brachyury, which is present at very high levels in nearly all chordomas. Unlike “prophylactic” vaccines designed to prevent disease (such as the flu vaccine), therapeutic vaccines like GI-6301 are intended to help the immune system fight disease more effectively. Research in other cancers suggests that the combination of radiation plus therapies that stimulate the immune system can have powerful antitumor effects. Therefore, in this trial, researchers are seeking to determine whether stimulating the immune system with GI-6301 in combination with radiation can cause tumor shrinkage and/or prevent further tumor growth to a greater degree than radiation alone.

This trial follows a recently completed Phase 1 clinical trial of GI-6301 at the National Cancer Institute, which demonstrated that the vaccine could be delivered safely without serious adverse reactions, and that it was capable of inducing immune responses against brachyury in chordoma patients. Of the eight patients whose tumors were growing when they entered the phase 1 trial, five stopped growing and one shrunk by more than 30% while on the study.

To be eligible to participate in this study, patients must have only localized tumor (no metastases) and be able to receive “definitive” radiation therapy, meaning at least 70Gy. Participants in the trial will initially be randomized to receive radiation plus the vaccine or radiation plus a blinded placebo. Those randomized to receive radiation plus placebo will have the option to “cross-over” and begin receiving the vaccine if their tumor grows while on the study, meaning that everyone who enters the study will be given the opportunity to receive the vaccine if radiation alone is not stopping the growth of the tumor.

The trial is taking place at the National Institutes of Health (NIH) Clinical Center in Bethesda, Maryland. Participants will need to visit the Clinical Center multiple times while on the study to receive vaccine injections and follow-up scans. The NCI will pay for transportation costs (including airfare) and a portion of lodging costs for enrolled patients. Radiation treatments are performed at an institution of the patient’s choice as part of routine care, and will not be covered by the NCI.

For additional details about this trial see the following resources:

Note to patients:

To help you make sense of this trial, we have worked with the National Cancer Institute to create a downloadable trial FAQ sheet, available here. A Chordoma Foundation patient navigator is also available to answer your questions about this trial. Please feel free to contact us at support@chordoma.org.

To enroll in this trial, contact the NCI Patient Referral Office at 866-611-6310 or email Laura Otten at ottenl@mail.nih.gov or Cynthia Boyle at cynthia.boyle@nih.gov.  You may also contact the principal investigator of this study, Christopher Heery, M.D., directly or through your physician at heerycr@mail.nih.gov.

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First Patient Services Manager hired to focus on improving the lives of those affected by chordoma http://www.chordomafoundation.org/latest-updates/first-patient-services-manager-hired-focus-improving-lives-affected-chordoma/ Wed, 15 Apr 2015 18:57:32 +0000 http://www.chordomafoundation.org/?p=8781 The Chordoma Foundation began with a dual mission to lead the search for a cure and to improve the lives … Continue reading

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Shannon Lozinsky

The Chordoma Foundation began with a dual mission to lead the search for a cure and to improve the lives of those affected by chordoma. While we have always focused on both, during the early years as a small, upstart organization, we invested more of our limited resources in advancing research, even as we recognized the tremendous need within the patient community for assistance in finding optimal care and overcoming both the practical and emotional challenges of battling this disease.

At last, thanks to the hard work and generosity of so many, the Foundation has grown to the point that we now have the resources and capacity to devote more attention to our efforts to serve the patient community. To this end, we are excited to announce that Shannon Lozinsky has joined the Chordoma Foundation’s staff as our first Patient Services Manager. A Licensed Clinical Social Worker Associate and trained educator, Shannon has spent her career working in nonprofit organizations, social service agencies, and in private counseling practice with adults, children and families.

As Patient Services Manager, Shannon will oversee a suite of new programs including:

  • Our new Patient Navigation Service, which provides one-on-one guidance and personalized support to patients and families through every stage of their journey, helping to them to understand and access optimal treatment options and navigate the financial and logistical challenges of getting appropriate care.
  • A searchable Doctor Directory to help patients find experienced chordoma specialists,
  • Timely announcements about new clinical trials and assistance with enrolling in these trials,
  • New educational materials and website content to help patients and families make well-informed healthcare decisions,
  • Chordoma Community Conferences, including our new series of regional conferences as well as national and international events,
  • An expanded Peer Support Program to help members of the patient community connect and support one another; and
  • More programs and services to identify, connect with, and meet the needs of chordoma patients around the world.

As Patient Services Manager, Shannon will work closely with our Medical Advisory Board to shape these programs to meet the unique needs of the chordoma patient community, with a particular focus on empowering patients to make decisions that help them achieve their own goals throughout their journey with chordoma.

Shannon joins us excited to be a source of support and information for the chordoma community. “I am impressed by the chordoma community’s dedication to one another and the lasting relationships that are forged through the shared experiences of those battling this disease,” she says. “I am looking forward to supporting this community in any way that I can.”

We think you’ll find Shannon thoughtful, sensitive and easy to connect with, and we’re excited to welcome her to the Foundation team. Shannon will work out of our office in Durham, North Carolina. While she is currently a one-woman shop, we anticipate adding to her team as our services and resources grow.

To take advantage of these services, reach out to Shannon and the Patient Services Program by calling 919-809-6779, ext. 114 or emailing support@chordoma.org.

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Southern California Community Conference a resounding success http://www.chordomafoundation.org/latest-updates/southern-california-community-conference-resounding-success/ Mon, 16 Mar 2015 18:42:33 +0000 http://www.chordomafoundation.org/?p=8776 On March 14, 2015, we kicked off a series of regional chordoma community conferences in Los Angeles at the Keck … Continue reading

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SoCal 2015 group

On March 14, 2015, we kicked off a series of regional chordoma community conferences in Los Angeles at the Keck Hospital of the University of Southern California. The event, which was co-hosted by Keck Medicine, featured presentations by faculty members from USC, UCLA, John Wayne Cancer Institute and Loma Linda University Medical Center on the treatment approaches for chordoma, promising research, and insights on living with this disease. Participants also had a chance to connect with one another and share experiences with those facing similar challenges.

Fifty-five patients and family members from California, neighboring states, Canada, and as far away as Hong Kong attended our first regional conference, including newly diagnosed patients, long-term survivors and those in the throes of the disease. For many, the conference was their first opportunity to connect with fellow members of the chordoma community and to get involved in our search for a cure. We are grateful to all who participated and provided feedback to make future events even more valuable.

Special thanks to our partners at Keck Medicine, in particular Dr. Gabriel Zada, director of USC’s Skull Base Center, for their time and effort to make this event such a resounding success. Thanks, too, to corporate sponsor Sanofi which, in covering some of the Chordoma Foundation’s expenses, made it possible for us to offer this event at no charge to the chordoma community.

Since 2008, the Chordoma Foundation has hosted six international Chordoma Community Conferences. This year, as part of our increasing focus on serving the patient community, we are hosting a series of regional conferences around the U.S. Our goal is to enable participants to learn; connect with fellow patients and families; and take action, whether by taking advantage of Foundation resources such as the new Patient Navigation Service, Biobank and clinical trials, or volunteering, contributing or fundraising.

The next regional community conference will be held in New York City at Memorial Sloan Kettering Cancer Center on June 13th. Click here for more information and to register.

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First humanized mouse model of chordoma enables testing of promising immune therapies http://www.chordomafoundation.org/latest-updates/first-humanized-mouse-model/ Tue, 10 Mar 2015 18:16:57 +0000 http://www.chordomafoundation.org/?p=8771 In recent years, thanks to a string of high-profile success stories, immune therapy has emerged as one of the most … Continue reading

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In recent years, thanks to a string of high-profile success stories, immune therapy has emerged as one of the most promising approaches to fighting cancer (See “Cancer’s Super-Survivors” in the Wall Street Journal). Building on that recent success, a wave of powerful new therapies are now being developed, including therapeutic vaccines, oncolytic viruses such as a polio-based treatment recently featured on 60 Minutes, and drugs called immune checkpoint inhibitors that block the ability of tumor cells to hide from the immune system.

To help chordoma patients take advantage of this promising new class of therapies, we have recently worked with Dr. Michael Lim at Johns Hopkins University and collaborators at the Jackson Laboratory to develop the first chordoma mouse model suitable for testing immune therapies. Most mouse models of cancer, including the patient derived xenograft models of chordoma developed in recent years, involve human tumors implanted into mice that lack a functioning immune system, and, thus, do not reject foreign cells (mice with functional immune systems reject tumors just like people reject organs from other individuals). However, these xenograft mouse models cannot be used to test immune therapies, which work by stimulating the immune system to attack cancer cells.

To overcome this limitation, with guidance from Dr. Lim, last year we contracted with the Jackson Laboratory to develop mice with a functional human immune system, known as “humanized” mice. The immune system of these mice is engineered to match immune fingerprint of the precise patient whose tumor they will harbor. After nearly a year developing these mice, the first mice were delivered to Dr. Lim in January and are now being studied in his lab.

In February, with an initial $30,000 seed grant, we began funding Dr. Lim to test promising therapies in this new model, starting with a class of drugs called checkpoint inhibitors. This project builds upon findings from Lim’s previous Foundation-funded study in which he successfully demonstrated that chordomas express immune checkpoint molecules that may enable the tumors to evade destruction by the immune system. His findings were published in the January, 2015 issue of the Journal of Neuro-oncology (see article here).

By testing checkpoint inhibitors in the new humanized mouse models, Dr. Lim aims to determine which checkpoint inhibitors or combinations thereof are most likely to be effective chordoma. Preliminary results from this study are anticipated by year’s end. If positive, the goal would be to initiate a human clinical trial with one or more checkpoint inhibitors that are being developed. Meanwhile, we continue to work with Dr. Lim and other researchers to explore the potential of a variety of types of immune therapy for the treatment of chordoma.

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First clinical guidelines for chordoma treatment published in The Lancet Oncology http://www.chordomafoundation.org/latest-updates/first-clinical-guidelines-for-chordoma-treatment-published-in-lancet-oncology/ Thu, 19 Feb 2015 14:59:07 +0000 http://www.chordomafoundation.org/?p=8682 This month, chordoma patients, caregivers and physicians got a powerful new resource to aid in the fight against chordoma with … Continue reading

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This month, chordoma patients, caregivers and physicians got a powerful new resource to aid in the fight against chordoma with the publication of the first-ever set of detailed, multidisciplinary expert recommendations for the appropriate treatment of chordoma.

The guidelines, published in the prestigious international medical journal The Lancet Oncology, are the outcome of a year-long global effort spearheaded by Drs. Silvia Stacchiotti and Paolo Casali of the Fondazione IRCCS Istituto Nazionale dei Tumori (INT) in Milan, Italy and Chordoma Foundation Board member, Hans Keulen. INT is Italy’s main referral center for the treatment and study of cancer.

In December 2013, at the invitation of Drs. Casali and Stacchiotti, 40 chordoma experts representing multiple disciplines from both sides of the Atlantic convened in Milan during a European Society of Medical Oncology conference to launch this ambitious effort to codify the most effective, evidence-based treatments for chordoma. The Chordoma Foundation provided funding for this meeting.

“Chordoma is a very rare tumor, but in the last 10 years much progress has been made in the understanding of the biology of this disease, and, as a result, new therapeutic opportunities have been introduced,” Stacchiotti said. “However, it remains a challenging disease to manage and requires a multidisciplinary approach with coordinated involvement of several specialists. We see a great deal of inconsistency in how chordoma patients are treated, resulting in suboptimal outcomes for many patients. Therefore, it was evident that global consensus around the management of this tumor was needed.”

Meeting participants agreed on the need to take a multidisciplinary approach to chordoma and to build an international community of experts and patients to share their diverse perspectives. Throughout 2014, the group drafted and edited the treatment guidelines and prepared them for publication in one of the world’s foremost peer-reviewed medical journals. “Building a global consensus approach to chordoma: a position paper from the medical and patient community,” appeared in the February edition of The Lancet Oncology.

The clinical guidelines offer a level of detail unprecedented for chordoma, addressing factors such as:

  • Location of the tumor (skull base, spine or sacrum)
  • Point in time (newly diagnosed, recurrent, etc.)
  • Modes of treatment (surgery, radiation and systemic therapy)

“Until now, there had never been a consensus laid out by medical experts on how chordoma should be treated,” said Chordoma Foundation Executive Director Josh Sommer, who provided a patient perspective and co-authored the paper. “This is a significant achievement because it will empower patients and families around the world to make wise treatment decisions, and will provide physicians with a road map to most effectively care for their chordoma patients.”

The publication of these treatment guidelines marks a major step forward in the Chordoma Foundation’s efforts to improve the lives of patients by working with the medical community to improve the diagnosis and treatment of this rare cancer. This paper is just the start, Stacchiotti noted. “More still needs to be done to address open questions, especially for recurrent disease, and to improve the level of evidence supporting each recommendation. We hope that in the near future we can meet again to gain consensus on these additional topics.”

To access the consensus paper that appeared in The Lancet Oncology, click here or email us at support@chordoma.org. Because this paper has been written for a physician audience, the Foundation plans to translate the report into educational content more appropriate for a lay audience.

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Welcome to our new Board Chair and our first European Board member http://www.chordomafoundation.org/latest-updates/welcome-new-board-chair-first-european-board-member/ Mon, 02 Feb 2015 14:49:43 +0000 http://www.chordomafoundation.org/?p=8683 We are pleased to announce that the Foundation’s Board has elected Andy Schoelkopf of Greenwich, CT, as its new Chair. … Continue reading

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We are pleased to announce that the Foundation’s Board has elected Andy Schoelkopf of Greenwich, CT, as its new Chair. Andy succeeds, Heather Lee, of Chapel Hill, NC, who has served in the role for nearly five years. The Foundation is extraordinarily fortunate to have these two dynamic, accomplished and committed members of the chordoma community to lead the organization through such critical stages in our development.

Heather joined the Board in 2007 and became Chair in 2010 at a time when the Foundation was transitioning from its infancy into a professional organization. Under her leadership – shaped by her own experience battling the chordoma that took her son Justin in 2008 – the Board provided the strategic vision, governance structure, support and encouragement that enabled us to grow and thrive.

During Heather’s tenure, the Foundation’s full-time professional staff grew from two to five; our annual budget more than tripled; our research investments began to bear fruit in significant ways; and our patient services expanded in depth and breadth in the U.S. and around the world. Encouraged by this momentum, more and more individuals, families and organizations have stepped forward to support the Foundation, and in 2014 we passed the $2 million mark for annual fundraising for the first time ever. We have accomplished a tremendous amount in the past five years and, due in large measure to Heather’s leadership, the Foundation is in a strong position to do even more important work in the coming years.

Thanks to great teamwork between Heather and Andy, the Board hasn’t missed a step during this leadership transition. Andy joined our Board in 2013, after his brother, Rob Schoelkopf, was diagnosed with chordoma. A natural leader, Andy immediately found ways to make an impact at the Foundation, in particular by serving as Chair of the Board’s Education and Outreach Committee.

With an MBA and significant business experience in both large companies and entrepreneurial start-ups, Andy brings valuable expertise the Foundation will need as we continue to grow to more fully meet the needs of the chordoma patient community and invest more in accelerating the search for a cure. He is actively leading the Board through a strategic planning process  which will guide the Foundation’s growth over the next five years.

We are fortunate that Heather will continue to serve on the Board for one more year (she will also chair the Board’s Education & Outreach Committee), ensuring a smooth transition and providing valuable counsel to Andy as he steps into this important role.

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In another important development for the Foundation, the Board has gained an important international voice with the election of Hans Keulen to its ranks. Hans, a chordoma survivor who hails from the Netherlands, is the Foundation’s European Liaison and has been instrumental in our efforts to extend our reach to serve the global chordoma community. Hans brings to the Board a wealth of experience as a serial entrepreneur in the software and IT space. Among his leadership contributions at the Foundation, Hans has already organized several European Community and Physician/Researcher Conferences and helped spearhead the international effort to develop consensus treatment guidelines for chordoma that recently led to a milestone publication in The Lancet Oncology. Hans has also become a leading voice for rare cancer patients in Europe through his participation in advocacy efforts with the Sarcoma Patients EuroNet, Rare Cancers Europe and the European Society of Medical Oncology. He unique perspective that will be particularly valuable as the Foundation makes plans to expand its activities into Europe.

The Foundation is deeply grateful for the tremendous amount of time, energy and support that all of our Board members, past and present, have devoted to advance our mission to improve the lives of those affected by chordoma and lead the search for a cure. To read more about Heather, Andy, Hans and the rest of our Board members, click here.

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