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Update from the Chordoma Foundation - September 2016
Navigating life with chordoma
We’re excited to share this video presentation on navigating life with chordoma from experts April Zehm, Jayne Donovan, and Al Ferreira of Massachusetts General Hospital. Filmed at the International Chordoma Community Conference (ICCC) in July 2016, it addresses the role and value of palliative care, offers tips on rehabilitation, and provides advice for becoming your own best advocate. Part of a larger effort to arm patients and families with the information they need to effectively navigate life with chordoma, the complete series of video presentations from the ICCC are available here. If you have any questions or need advice, contact a Patient Navigator

Watch video »

FEATURED RESEARCHER

International leader in chordoma research and treatment seeks recipe for a cure

Dr. Silvia Stacchiotti is a clinician and researcher who has dedicated her practice to curing chordoma once and for all. At the Istituto Nazionale Tumori in Italy, Dr. Stacchiotti leads one of the most active sarcoma and chordoma practices in the world. In addition to her clinical practice, she spearheaded some of the first clinical trials in chordoma, and led the team of medical experts that developed the first consensus guidelines for the diagnosis and treatment of chordoma patients. “I have worked with patients of all ages who have suffered with this rare disease, and the support they have shown for our efforts to improve treatment is very encouraging,” she says with appreciation. “Their kindness and passion makes us all want to do more to try to help.”

Learn how Dr. Stacchiotti is moving chordoma research forward »

CF NEWS

Josh Sommer and Chordoma Foundation profiled in Cancer Today

News of the progress being made in chordoma research continues to spread, and our Executive Director, Josh Sommer, was recently interviewed about it by Cancer Today Magazine, a quarterly publication of the American Association of Cancer Research. The Fall 2016 issue, released this week, includes a Q&A with Josh detailing his personal journey with chordoma, the role and activities of the Foundation, and advice for patients wishing to spur progress in cancer treatment. “Patients banding together can be an extraordinarily powerful driver of progress in research and drug development. Not only can they be a driver of progress, but they are needed in the research process.”

Read the full profile »

CF EVENTS

Chordoma Community Conference at Mayo Clinic – Saturday, October 15

Next month, CF and the Mayo Clinic in Rochester, Minnesota, will jointly host a regional Chordoma Community Conference for patients, family members, and loved ones located in the Midwest. The agenda for this event is now available, and it features a prominent roster of chordoma experts addressing a range of topics from the latest advancements in research and treatment to tips for improving quality of life with chordoma. Register online by October 7 or onsite the morning of the conference.

Register TODAY »

FEATURED VIDEO

Dr. Chandra Sen: A look back at how far we’ve come

Dr. Chandra Sen, neurosurgeon at New York University’s Langone Medical Center and member of the Foundation’s Board of Directors, walked participants at the International Chordoma Community Conference through a journey of how the field of chordoma has evolved since the Foundation was created, highlighting the incredible pace of progress in science and care over the last nine years. “I think it would be an understatement for me to say the Chordoma Foundation has tackled the bull by the horns,” he noted. “It has addressed this topic so systematically, so methodically, that in less than 10 years we have gone from what is this cell, to here are all of the ways we can treat it.”

Watch video »

GET INVOLVED

October 1 pub crawl benefitting CF: Long Island, NY

Will you be in or around Long Island on Saturday night? If so, please consider joining the Riccomini family for their annual pub crawl and fundraiser in West Sayville, Long Island. Since losing their son Cameron to chordoma in 2012, the Riccominis have generously hosted this annual event as a way to celebrate Cameron’s life and improve the odds for other patients and families in his honor. Tickets are $25. 

Attend the Riccominis' pub crawl » 

OPPORTUNITIES TO PARTICIPATE IN RESEARCH 

Study seeks volunteers to help uncover the genetic basis of chordoma

Scientists at the National Cancer Institute (NCI) are seeking to determine whether genes other than brachyury could play a role in familial chordoma – rare instances of chordoma occurring in multiple members of the same family. Investigators in the NCI’s Genetic Epidemiology Branch are seeking individuals affected by chordoma – whether or not anyone else in their family has the disease – to help advance this research by participating in the study. For more information and find out if you are eligible, contact a Patient Navigator or the senior study investigator at the NCI, Rose Yang

Learn more about the NCI chordoma study » 
      

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