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Update from the Chordoma Foundation - December 2016

Highlights of 2016

Thanks to your support, over the past few years we’ve overcome many of the hurdles that once stood in the way of chordoma research and developed a growing suite of resources and services to help make life better for patients facing chordoma. This year, that translated into record research progress and a 50% increase in the number of patients served.
 
In 2017 we’ll see several promising therapies move out of the lab and into clinical trials, start making significant investments in developing drugs to target brachyury, and begin to position chordoma to benefit from rapid advances in immunotherapy. At the same time, we’ll redouble our commitment to helping patients get the best care possible by expanding our Patient Navigation Service and releasing a series of new educational resources.
 
Read more about this year’s top accomplishments and what we have planned for the year ahead »
 
After working for nearly a decade to improve the lives of patients and lead the search for a cure, we’re on the verge of a new chapter in the fight against chordoma. Promising new treatments are on the horizon and your support is vital to bringing them to fruition. You can help us keep the momentum going and give hope to those living with chordoma by making a tax-deductible year-end contribution today.
GIVE HOPE

CF NEWS

Announcing Canadian Cancer Society research partnership

We’re excited to announce a new partnership with the Canadian Cancer Society (CCS) focused on advancing chordoma research and therapy development in Canada. Through the partnership, Canadian donors can now make tax-deductible gifts to support cutting-edge chordoma research led by Canadian cancer researchers. Over the next two years, we aim to raise $200,000 which will be distributed through the CCS Research Institute’s Innovation Grants Program to promising peer-reviewed chordoma research projects. If you're in Canada and you would like to support this important initiative, please consider making a donation
 
For more information or to get involved, please contact our Canadian Chordoma Research Initiative leaders, chordoma survivors, J. Edward Les, MD (ed@chordomafoundation.org) and Steven Golick (sgolick@chordomafoundation.org). 

FEATURED CHAMPION

Maureen Schroer: Helping others to find their silver lining

Maureen Schroer was diagnosed with a skull base chordoma in 2012, and underwent emergency surgery just 48 hours later. Hers was an uncommon journey, even by chordoma standards. Inspired by another survivor she met through the Foundation, Maureen has become an active chordoma fundraiser and advocate, and is currently training to become a Peer Guide. “I don’t really relate to the term ‘in remission’,” she notes. “I HAVE cancer. It’s not past tense. But I don’t let that rule my life. It’s part of who I am, but it doesn’t define me. In fact, in some ways I’m a much happier person now. It’s funny to think I’d be happier living with chordoma than in my old life, but that’s how it is.” 
 
Read Maureen’s featured champion profile »

UPCOMING EVENTS

Second Annual Brooklyn Half Marathon

Chordoma survivor and Team Chordoma captain Steve Mandel is lacing up his running shoes for his fourth race in support of chordoma research, and second in Brooklyn. He will race in the Airbnb Brooklyn Half on Saturday, May 20, 2017 and is looking for runners to join his team. Last year’s events brought together 30 runners and more than 100 supporters, raising $50,000 for chordoma research, and he hopes to top those totals this year.
 
Registration for the Brooklyn Half opens on January 26, and typically sells out in less than an hour. If you’re interested in joining Steve’s team, please complete this doodle poll by January 15.
 
Not a runner? Not a problem. Cheer on the runners, and join them for a post-run celebration! More details to follow.

GET INVOLVED

Tell us how we can best serve you

We are steadfastly committed to making life better for those affected by chordoma, and, over the past two years, we've made exciting strides in providing vital information and one-on-one support. But we are constantly striving to do better and offer more personalized and relevant information. Please help us understand the issues, resources, and questions that matter most to you by taking this five-minute, online survey. Your input will enable us to serve you better and more fully meet the evolving needs of our community. Even if there’s nothing you need at the moment, your perspective is valuable to us and we hope you’ll participate.
 
Share your feedback »

OPPORTUNITIES TO PARTICIPATE IN RESEARCH 

Clinical trial available for patients with dedifferentiated chordoma

Patients with dedifferentiated chordoma – a rare and aggressive subtype – may have a new treatment option: a recently opened clinical trial of an experimental cancer drug called tazemetostat. This trial is specifically for cancer patients whose tumors are deficient in a protein called INI1, which protects cells from becoming cancerous. Dedifferentiated chordoma is one of several types of cancer included in this trial because of the recent discovery that INI1 loss is common in this subtype of chordoma. For more information about this trial, contact our Patient Navigators or read the trial description at clinicaltrials.gov.
  • Pediatric tazemetostat trial: Also currently enrolling is a Phase 1 trial to evaluate the effective dose of tazemetostat in pediatric patients whose tumors have a loss of the INI-1 gene. For more information, contact trial administrator Maria Roche at clinicaltrials@epizyme.com.

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