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Update from the Chordoma Foundation - June 2016

Updated Doctor Directory now includes more than 100 chordoma specialists

Finding an experienced treatment team is one of the most important decisions chordoma patients can make, but this is not always easy. The Chordoma Foundation Doctor Directory, launched in 2012, is designed to help patients and their loved ones more easily find and connect with chordoma specialists who meet criteria established by our Medical Advisory Board. Last year more than 4,800 individuals from across the world accessed this resource. Now, in response to requests and feedback from the chordoma community, we are pleased to announce several important enhancements to the directory:
  • Recently updated and verified information for existing doctor profiles
  • Expanded the list of vetted specialists in the U.S., and began adding specialists in other countries
  • Implemented a new design that is easier to search and mobile-friendly so that it can be accessed from any device
  • Added more frequently-requested information to doctor profiles, including patient point of contact, and whether the doctor provides remote consultations
These updates are part of our ongoing commitment to help patients find and access the care they need. We will continue to expand and improve this directory, and welcome your suggestions for additional specialists or features. Please send questions and feedback to support@chordoma.org.

Read more about the latest Doctor Directory updates »

CF NEWS

New Community Advisory Board formed to gain input from patients and caregivers

We’re excited to announce the formation of our new Community Advisory Board (CAB), comprised of patients and caregivers whose guidance, ideas, and feedback will help us enhance our programs and services to improve the lives of everyone affected by chordoma. Complementing our existing Medical and Scientific Advisory Boards, the CAB will provide input to our staff and Board on a variety of topics and initiatives, including patient services, research, communications, and fundraising. Find out what it means to serve on the CAB, learn what the group will do, and meet the inaugural members.

Read more about the CAB »

Our website is now mobile responsive

Want to read our latest updates on the go or reference information on our website from a doctor’s office? You can now do this more easily thanks to our website's newly updated mobile responsive design. This means you can now access the site from any smartphone or tablet and the content will automatically adapt to your screen size. This is just one more way we hope to reduce barriers to getting the information you need. Take a look around chordomafoundation.org today!

Explore our mobile responsive website »

Help us hire a Director of Development

Our search continues for a passionate and entrepreneurial Director of Development to lead the Foundation’s fundraising efforts and help expand our impact. Know someone who would be a great fit? Please get in touch or send them our way! 
 
Read job description and apply today » 

CF EVENTS

What to expect at a Chordoma Community Conference

Wondering what a Chordoma Community Conference is all about? Curious to know how it could be helpful to you? Check out these insights from past participants – both patients and family members – and find out what they took away from the experience, and why they think you’ll benefit from it too. Convinced? Great! You have two opportunities to join us for Chordoma Community Conferences this year, in Boston on July 16 and at the Mayo Clinic in Rochester, MN on October 15. We hope to see you there.​

Read the interviews and register today »

Last opportunity to reserve discounted hotel rooms in Boston

If you're planning to attend our upcoming International Chordoma Community Conference in Boston on July 16, don't forget the discounted room rate at the Boston Marriott Cambridge expires today (Wednesday, June 22)! ​

Reserve a room at the Boston Marriott Cambridge »

GET INVOLVED

Remembering those we’ve lost: Participate in a memorial presentation

Thanks to the unfaltering hard work and support of our dedicated community, we will have much progress to celebrate at the upcoming International Chordoma Community Conference this July. Still, the poignant reality is that we continue to fight a deadly disease, which means that many of us joining together at the conference will find ourselves feeling the losses to our community. To remember those we've lost, we are preparing a memorial presentation that will be displayed at the conference. If you have lost a loved one to chordoma, we invite you to participate in this tribute. ​

Include your loved one in our tribute » 

Get trained as a Peer Guide

Peer Guides provide one-on-one support to others who have been affected by chordoma through our Peer Connect program. We are working to expand our network of Peer Guides and are hosting a Peer Guide training for qualified applicants in Boston on Friday, July 15 from 1-4 PM (the day before our International Chordoma Community Conference). Do you want to become a Peer Guide for others who have been through similar experiences with chordoma? Apply today and, if selected, we will provide training to help you use active listening tools to provide support. 
 
Apply for our Peer Guide training »

FEATURED CHAMPION

Brittany and Todd Fuchs

When Brittany and Todd Fuchs first started dating, Todd’s battle with chordoma felt like a part of his past. But a month after their wedding, his tumor returned with a vengeance. Brittany sprang into action, volunteering, fundraising, and even helping out in a lab to find answers for Todd and other families. We're honored to tell the Fuchs' story as our newest Featured Champions.
 
Read more about Brittany and Todd Fuchs »

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 Navigator at support@chordoma.org or read the trial description at clinicaltrials.gov

Study seeks volunteers to help uncover the genetic basis of chordoma

For 20 years, scientists at the National Cancer Institute (NCI) have been conducting research to understand the genetic causes of chordoma. Their research has revealed that some cases of familial chordoma – rare instances of chordoma occurring in multiple members of the same family – are caused by inheriting an extra copy of a gene called brachyury, a finding that has sparked research into the role of brachyury in non-familial chordoma as well as other types of cancer. Now, they are seeking to determine whether other genes could also play a role in familial chordoma, and how changes in those genes may also contribute to the development of chordoma in individuals without a family history. If you are affected by chordoma – whether or not anyone else in your family has chordoma – you can help advance this research by participating in the NCI Chordoma Study. For more information about participating in this study, contact our Patient Navigator at support@chordoma.org or the senior study investigator at the NCI, Rose Yang

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