Chordoma Foundation

CF in the News

Rare Cancer Advocacy Programs Help Patients Discover Resources and Make Connections

“A cancer diagnosis can be difficult for any patient to receive, but a rare cancer diagnosis can put additional stress on a patient and their family. They may feel isolated and struggle to find accurate information…Rare cancer advocacy groups [like the Chordoma Foundation] offer critical patient support and empowerment, raise awareness, and initiate research for treatments.”

Our Director of Patient Services Shannon Lozinsky is featured for her team’s work to help our community access the best care and lead the fullest lives possible.

September 2021

Advocates and Allies: The Pioneers of Progress

“Cancer advocates have a long history of making sure patients’ voices get heard. In fact, one notable advocate had a major role in making the National Cancer Act a reality. Meet these not-so-silent allies of yesterday and today who challenge the status quo, push for progress, and accelerate change in the world of cancer.”

Our Executive Director Josh Sommer is highlighted in this article for his efforts to re-engineer cancer research to accelerate progress.

March 2021

7 Patients Who Are Leading the Charge Against Their Rare Disease

“A growing number of patients are mobilizing to drive progress in the fight against rare disease.”

That’s the story of the Chordoma Foundation: started by patients, driven by patients, accelerating the search for a cure. We’re honored to have that story told in a Medium article from the Chan Zuckerberg Initiative (CZI) as part of their Rare As One Project, which aims to enable and encourage more patients to tackle their respective rare diseases. 

The chordoma community may not be large, but together we are accomplishing big things and setting an example for others. Many thanks to all who have come together to make this work possible, and to CZI for highlighting the vital role patients play in advancing research.

August 2019

Patient Profile: Turkish connection brings man to R.I. for life-saving surgery

The Providence Journal profiled Gokhan Erkovan, a sacral chordoma patient from Los Angeles, who underwent a successful surgery last June. The surgery was performed by chordoma expert and CF Medical Advisory Board member, Dr. Ziya Gokaslan. 

October 2018

Patient Profile: Years after life-changing surgery

The St. Thomas Times-Journal profiled a patient’s 4-year journey with chordoma and how after a life-changing surgery to remove his tumor, he was able to return to practicing and training others in kickboxing and jiu-jitsu. The article also features quotes from the Chordoma Foundation’s Director of Research, Joan Levy, PhD, and chordoma patient and Co-Founder of the Canadian Chordoma Network, Steven Golick.

January 2018

Alumni Entrepreneur: Josh Sommer

Our Executive Director, Josh Sommer, was featured in a profile by the Duke Innovation and Entrepreneurship Initiative which touted the Foundation’s scientific momentum and philanthropic innovation.

July 2017

From Small Things

This Genome Magazine story by Editor-in-Chief Misha Angrist relays the history of the Chordoma Foundation and profiles many of the people and events that helped catalyze early progress in chordoma research and transform this devastating neglected disease into a solvable scientific problem.

March 2017

A Rare Drive

Cancer Today, a publication by the American Association for Cancer Research, spoke with Josh Sommer about how he got his start in research and advocacy and what patients can do to spur progress in treating cancer.

August 2016

Innovator Spotlight: Chordoma Foundation on the Creation of a Patient Navigation Service

FasterCures, a think tank that works to speed and improve the medical research system, profiled our Patient Navigation Service (PNS) in their monthly innovator spotlight series. The Q&A with Executive Director Josh Sommer was shared with over 2,000 readers from hundreds of medical research foundations. It explained how the PNS serves patients and families in need of support, and offered tips and insights for other organizations seeking to build successful navigation tools. This is the second time CF has been profiled in the innovator spotlight series, which aims to help foundations that fund research share best practices and ideas.

July 2016

A Young Doctor Fights to Cure His Own Rare, Deadly Disease

After a dire diagnosis David Fajgenbaum had to figure out in which direction to run. Guidance came from another young man, Josh Sommer, now 28 years old, who was diagnosed as a freshman at Duke University with chordoma, a rare bone cancer that often appears in the skull and spine. Sommer formed the Chordoma Foundation in Durham, North Carolina, which he’s headed ever since.

July 2016

Hand in Hand: Patient Services and Research

FasterCures, a center of the Milken Institute, invited senior leaders from across sectors in medical research to offer their insights on cutting through the roadblocks that slow medical progress. Josh Sommer wrote an article highlighting that rather than competing for resources, patient services and research should work together to achieve the ultimate mission of finding cures.

November 2015

The Man Working to Cure His Own Cancer

Josh Sommer was diagnosed with chordoma in 2007 when he was a student at Duke University. Since then he has turned his own struggle with this rare cancer into a successful foundation that is accelerating the pace of research and bringing hope for a cure to everyone affected by this disease.

March 11, 2014

Doing Better: Chordoma Foundation Spurs Change by Following Key Principles

The Chordoma Foundation has taken innovative approaches to overcome the obstacles that stand in the way of research into a rare disease. By establishing partnerships to secure reliable funding and promoting widespread collaboration within the research community, the Foundation has enabled considerable progress in the search for a cure during its seven years of operation.

January 18, 2014

How this 25-Year-Old is Pushing Scientists To Understand His Rare Cancer

Josh Sommer spoke at the second annual Forbes Healthcare Summit during a panel discussion titled “One Man’s Search for a Cure”. Watch as he shares the powerful story of how his own diagnosis led to the formation of the Chordoma Foundation and describes the organization’s strategies for accelerating research into a rare disease.

October 15, 2013

Buckley Report: Josh Sommer’s Chordoma Foundation

Six years after its start, the Chordoma Foundation has made great progress toward better treatments. Bob Buckley reports on how far the Foundation has come and what still needs to be done to get chordoma patients the care they need.

February 5, 2013

30 Under 30: The rising stars transforming science and health

Josh Sommer, Executive Director of the Chordoma foundation, is leading the way in the field of Science and Healthcare. The healthcare landscape is transforming for the better, opening up to revolutionary new ideas and new approaches , and young people like Josh are playing a role in this incredible change.

December 17, 2012

The New Power Players in Drug R&D Are Wearing Bright T-Shirts

Nonprofits are playing an increasingly important role in driving drug research and development and the Chordoma Foundation is among those that are leading the way.

October 29, 2012

Genomics field gets a boost with rare-cancer breakthrough

Today, scientists made a major step in cancer research; they identified the underlying genetic cause behind a rare form of carcinoma cancer, chordoma.

This discovery puts the emerging field of genomics on the map, may speed up the drug approval process, and reduces the risks associated with groundbreaking research for venture-funded biotech companies. For genetics researchers, it adds credence to the theory that studying rare cancers may reveal more fundamental aspects of cancer biology that are relevant across all types.

October 15, 2012

What Can Tempt Researchers to Try Tackling a Tough Job? Try Offering a Prize

Cell lines are critically important to cancer researchers, but developing them is frequently time-consuming, frustrating and unglamorous work.

In 2010, the Chordoma Foundation partnered with Innocentive to launch a cell-line challenge, offering $10,000 prizes to researchers in order to  to accelerate the search for treatments.

April 24, 2012

Seattle’s Sage Bionetworks seeks a drug-discovery revolution

Josh Sommer’s talk at the Sage Congress inspired scientists, and pharmaceutical company executives to share and collaborate to speed the pace of drug development.

“The crowd, recalled conference organizer Stephen Friend, fell silent. All those brainiacs and fancy pants knew the problem wasn’t chordoma research, per se. It was them. It was how they kept their own cancer research to themselves. Their diabetes research. Parkinson’s, Alzheimer’s, heart disease, you name it.”

February 11, 2012

New cancer report: Targeted therapies a success

Josh Sommer spoke alongside distinguished leaders in the field of cancer research at a press conference in Washington, DC announcing the release of the AACR Cancer Progress report 2011. Josh’s talk, which begins at 42:30 in this webcast, highlighted the progress in chordoma research, and urged increases in federal funding of cancer research in order to capitalize on powerful new technologies.

September 20, 2011

Silke Brüderlein has “Green Fingers” for Cell Cultures

Cell biologist Silke Brüderlein at the University of Ulm has a knack for establishing cell lines from difficult-to-grow tumors. For creating the first two valid chordoma cell lines, the Chordoma Foundation awarded Dr. Brüderlein a $10,000 prize. Now she continues working to create novel cell lines and has a full pipeline of new chordoma cell lines in development.

July 25, 2011

Chordoma Patients Surviving Longer

Patients with chordoma are surviving longer, according to data reported at the Third International Chordoma Research Workshop, held in Bethesda, Maryland.

In a reanalysis of nationwide cancer registry Mary McMaster, MD, from the National Cancer Institute’s Genetics Epidemiology Branch found that the median survival of chordoma patients has increased from seven to nine years.

May 24, 2011

Open innovation – an emerging hope for biopharma?

Biomedical innovation is impeded by, among other things, constrained communication and interaction between scientists; knowledge turns need to be accelerated, and scientists in different labs need to share data and information as if working side-by-side.

March 11, 2011

Engineering Progress against a Rare Cancer

An indepth look at chordoma research and the progress catalyzed by the Chordoma Foundation, including development of therapies targeting brachyury, a gene recently discovered to be important for both sporadic and familial chordoma.

November 2, 2010

Advocate Q&A: Tackling a Rare Cancer

CR magazine’s interview with Chordoma Foundation founder Josh Sommer on how the foundation was formed and how it has aided collaboration in cancer research.

Spring/Summer 2010

Cancer and the Business of Medicine

On NPR’s To The Point, Josh Sommer speaks on a panel of experts about the challenges and opportunities the Chordoma Foundation faces in trying to cure chordoma, and conveys the urgency with which patients need research to move faster. (Josh is on at 30:40 and 40:45)

June 14, 2010

Desperately seeking cures

Sharon Begley explores the reasons why more discoveries don’t translate into cures. The Chordoma Foundation is mentioned as an example of how a nonprofit organization can accelerate the development of new treatments by facilitating the exchange of scientific materials needed for research.

May 16, 2010

Searching for your own cure

TV reporter Bob Buckley chronicle’s the story of Chordoma Foundation co-founders Josh and Simone Sommer’s urgent mission to find a cure.

February 22, 2010

Patient as Catalyst

The Chordoma Foundation’s innovative approach becomes a model for research in rare diseases.

February 9, 2010

The Loneliness of Fighting a Rare Cancer

Wall Street Journal Reporter, Amy Dockser Marcus, highlights the Chordoma Foundation as a model of innovation in the search for treatments for rare cancers.

January 5, 2010

Taking Another Step Towards a Cure

Researchers from Duke University Medical Center and the National Cancer Institute pinpoint abnormal genes as cause of familial chordoma.

November 5, 2009

Teaming Up to Tackle a Deadly Cancer

Survivor Daniel Alter’s battle against chordoma leads him to the Chordoma Foundation.

July 16, 2009

Racing to Find the Cure for His Own Cancer

Josh Sommer is named Person of the Week by ABC World News Tonight.

March 7, 2008

Exploring Rare Cancers

Chordoma Foundation’s work with Duke researchers is featured in the Duke Cancer Center Newsletter.

February 21, 2008

Reporter’s notebook: Courage to Cure Cancer

When Josh Sommer was diagnosed with cancer, he went to work in a lab to find a cure. NBC’s Jenna Wolfe reports on NBC TODAY Show how Sommer’s efforts grew into the Chordoma Foundation.

February 20, 2008

College Student Fights His Own Cancer

Duke student and chordoma survivor researches to find a cure for his own disease, featured in Associated Press and syndicated by papers across the US.

February 19, 2008

Junior Leads Charge Against Disease

The work of Josh Sommer and the Chordoma Foundation featured in The Chronicle, the student-run newspaper of the Duke community.

January 29, 2008

Patient leads fight for his life

Josh and Simone Sommer featured in Raleigh News and Observer about early efforts to spur research for chordoma.

December 23, 2007

Curing Chordoma

Josh and Simone Sommer interviewed on NPR’s The State of Things with Frank Stacio.

December 18, 2007

Fighting Time, Greensboro Man Encourages Study of Rare Disease

The Chordoma Foundation`s efforts to find a cure are featured in Triad Philanthrophy.

November 16, 2007

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