Chordoma Foundation http://www.chordomafoundation.org Wed, 02 Sep 2015 18:22:10 +0000 en-US hourly 1 New Programs Support Chordoma Clinical Trials http://www.chordomafoundation.org/latest-updates/new-programs-support-chordoma-clinical-trials/ http://www.chordomafoundation.org/latest-updates/new-programs-support-chordoma-clinical-trials/#comments 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/ http://www.chordomafoundation.org/latest-updates/new-clinical-trial-tests-therapeutic-vaccine-improve-effectiveness-radiation-chordoma-patients/#comments 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/ http://www.chordomafoundation.org/latest-updates/first-patient-services-manager-hired-focus-improving-lives-affected-chordoma/#comments 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/ http://www.chordomafoundation.org/latest-updates/southern-california-community-conference-resounding-success/#comments 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/ http://www.chordomafoundation.org/latest-updates/first-humanized-mouse-model/#comments 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/ http://www.chordomafoundation.org/latest-updates/first-clinical-guidelines-for-chordoma-treatment-published-in-lancet-oncology/#comments 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/ http://www.chordomafoundation.org/latest-updates/welcome-new-board-chair-first-european-board-member/#comments 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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New chordoma cell lines available to the research community http://www.chordomafoundation.org/latest-updates/new-chordoma-cell-lines-available-research-community/ http://www.chordomafoundation.org/latest-updates/new-chordoma-cell-lines-available-research-community/#comments Mon, 19 Jan 2015 05:35:51 +0000 http://www.chordomafoundation.org/?p=8678 The Chordoma Foundation has recently awarded $20,000 in prizes to Dr. Silke Brüderlein at the University of Ulm in Germany … Continue reading

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The Chordoma Foundation has recently awarded $20,000 in prizes to Dr. Silke Brüderlein at the University of Ulm in Germany for the creation of two new chordoma cell lines. With the addition of these two lines to our Cell Line Repository, researchers around the world now have access to seven different cell lines that are critical for research to understand chordoma and develop new treatments – and more are on the way.

Until 2010, only one valid chordoma cell line had ever been created, which made it impossible for researchers to confirm their findings and prevented many investigators from undertaking chordoma research altogether. In 2010, the Chordoma Foundation began a campaign to encourage labs to bring their efforts and unique approaches to bear on the problem by offering a $10,000 prize for each valid chordoma cell line submitted to our repository.

So far, four investigators around the world have claimed prizes for their cell lines, all of which are now available either through the Foundation directly or the American Type Culture Collection (ATCC), the world’s largest and most reputable cell line repository, which maintains and disseminates the Foundation’s cell lines.

The Foundation’s original goal was to create a collection of ten cell lines. However, thanks to extraordinary efforts by the research community and prizes underwritten by generous donors, we expect to surpass that goal within the next few months. Based on the recommendation of our Scientific Advisory Board, we have decided to continue expanding the repository, and awarding prizes for new cell lines, with the goal of developing a panel of cell lines that represents the full spectrum of chordomas seen in patients. This includes cell lines from both males and females; from clival, spinal and sacral tumors; from tumors of different histology; and from tumors resected before and after radiation. Our belief is that generating such a truly representative collection of cell lines will eventually help enable the discovery of treatments that are effective for all chordoma patients.

Would you like to help?

  • For $500, you can sponsor the distribution of one chordoma cell line from ATCC to a research lab.
  • For $2,500, you can help a research lab access all available chordoma cell lines.
  • For $10,000, you can fund a prize for a new chordoma cell line.
  • For $15,000, you can cover the cost of acquiring, validating and banking one cell line in perpetuity.

To learn about other ways you can help support this vital resource, please contact Josh Sommer at josh@chordoma.org.

Researchers: To obtain any of these cell lines, please contact Chordoma Foundation Manager of Research Patty Cogswell (patty@chordoma.org) and complete the MTA’s found here. For information on applying for our cell line prizes, see our prize announcement or contact Patty.

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Join us for the first Southern California Chordoma Community Conference http://www.chordomafoundation.org/latest-updates/join-us-first-southern-california-chordoma-community-conference/ http://www.chordomafoundation.org/latest-updates/join-us-first-southern-california-chordoma-community-conference/#comments Sat, 20 Dec 2014 00:55:41 +0000 http://www.chordomafoundation.org/?p=8571   As part of the Chordoma Foundation’s continued commitment to serve the chordoma patient community across country, we invite you … Continue reading

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As part of the Chordoma Foundation’s continued commitment to serve the chordoma patient community across country, we invite you to the first Southern California Chordoma Community Conference, hosted in partnership with Keck Medicine of the University of Southern California.

Join fellow members of the chordoma community in Los Angeles, CA on Saturday, March 14th for a day of learning, bonding and taking action. You’ll hear about state of the art treatment approaches from medical experts, gain practical skills and information to help manage the challenges brought on by chordoma, and have an opportunity to connect with others in the chordoma community. This will also be an opportunity to learn about the Foundation’s plans for advancing research to find a cure and to get involved in the fight against chordoma. Informal social events before and after the conference will also provide an opportunity to get to know fellow patients and caregivers in a relaxed setting.

For more information and to register click here. Thanks to the generosity of our donors, we are pleased to be able to offer this educational opportunity free of charge to participants. If you have any questions, please feel free to contact our patient services specialist, Shannon Lozinsky, at shannon@chordoma.org.

This promises to be an informative day and an exciting gathering for members of the chordoma community in Southern California and beyond. We hope you will be able to join us and look forward to seeing you in Los Angeles!

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New Medical Advisory Board to provide expert counsel on clinical research and patient services http://www.chordomafoundation.org/latest-updates/new-medical-advisory-board-provide-expert-counsel-clinical-research-patient-services/ http://www.chordomafoundation.org/latest-updates/new-medical-advisory-board-provide-expert-counsel-clinical-research-patient-services/#comments Tue, 30 Sep 2014 20:06:33 +0000 http://www.chordomafoundation.org/?p=8365 Until now, the Chordoma Foundation has focused primarily on advancing laboratory research to identify potential therapeutic targets and treatment approaches … Continue reading

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Until now, the Chordoma Foundation has focused primarily on advancing laboratory research to identify potential therapeutic targets and treatment approaches for chordoma. Over the past seven years, the Foundation’s investments in research have significantly accelerated the pace of discovery and produced exciting advances, some of which have helped pave the way for a series of upcoming clinical trials

Well on the way to accomplishing many of our initial research goals, we are now making plans to expand the Foundation’s work in two ways.

First, we are redoubling our commitment to serve the chordoma patient community and improve the lives of those affected by the disease. To that end, we are developing plans to roll out a suite of new services and resources that will help patients and caregivers become better educated about chordoma, get the best treatment possible, and effectively deal with practical and emotional challenges that come with a chordoma diagnosis.

Second, with opportunities for several clinical trials on the horizon, we are developing a strategy to position the Foundation to most effectively facilitate future clinical research.

To guide development of our community services and clinical research strategies, we have recently assembled a Medical Advisory Board (MAB) comprised of nine of the world’s leading chordoma specialists representing multiple disciplines and institutions. The inaugural chair of the MAB is Dr. Chandra Sen, a world-renowned skull base surgeon, who also serves on the Foundation’s Board of Directors.

The first meeting of the MAB was held on August 16th at the NYU Langone Medical Center in New York City. The full day meeting included discussion about how the Foundation could most effectively improve the standard of care for chordoma, facilitate clinical research, help patients get optimal care, and meet the various needs of the chordoma patient community.

“Our inaugural meeting went very well,” Sen reported. “We are all excited that the knowledge gleaned from Foundation-supported basic science research will soon start to be implemented in patient care.”

The MAB made numerous recommendations that we are now incorporating into our ongoing strategic planning process. Top among these recommendations was to create a centralized registry to track chordoma patients over time and determine how various treatments affect patient outcomes. This registry will allow us to learn from patient experiences regardless of where they are treated and will allow physicians everywhere to pool knowledge and learn from one another.

“Because there are so many variations among chordoma tumors, we know that we must tailor treatment based on each patient’s individual situation,” added Sen. Our goal is to develop standards for diagnosis and treatment so that all chordoma patients, wherever they are, can receive the appropriate treatment and support.”

In addition to providing strategic guidance, the MAB will play an ongoing role in vetting and overseeing our investments in clinical research and community services. Meanwhile, the Scientific Advisory Board will continue to help guide the Foundation’s ongoing laboratory research efforts.

Inaugural Medical Advisory Board Members

Tom DeLaney
Radiation Oncologist
Massachusetts General Hospital
Ziya Gokaslan
Spine Surgeon
Johns Hopkins
Mrinal Gounder
Medical Oncologist
Memorial Sloan Kettering
Fran Hornicek
Spine Surgeon
Massachusetts General Hospital
Shreyas Patel
Medical Oncologist
MD Anderson
Chandra Sen (Board Chair)
Skull Base Surgeon
New York University
Silvia Stacchiotti
Medical Oncologist
Istituto Nazionale dei Tumori
Katie Thornton
Medical Oncologist
Johns Hopkins
Josh Yamada
Radiation Oncologist
Memorial Sloan Kettering

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