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Check out our cause on facebook, and join over 3,600 fellow supporters in the fight to cure chordoma. So far we've raised over $25,000 through facebook...$10 and $20 at a time. Every donation adds up, so tell your friends! Twitter enables people to communicate and stay connected through the exchange of quick, frequent answers to one simple question: What are you doing?  sommerjo follow me on twitter to get behind the scenes updates on the Chordoma Foundation | The past few months have been exceptionally fast paced and productive. We’ve crisscrossed the country, meeting with researchers, visiting eleven different biobanks, making new connections, and forging new collaborations. All the while, we’re soaking up the latest information and getting closer and closer to launching a state-of-the art biobank for chordoma. 
View the Slideshow and Timeline At each stop along the way it’s been exciting to meet fellow chordoma patients, as well as many donors and advisers across the country. Thanks to everyone who showed us such great hospitality during our travels! |  Chordoma Foundation Wins New Partner Donate Games is a new nonprofit that collects used video games from gamers, and donates the proceeds from selling the games to organizations promoting research on rare diseases. We're thrilled that the Chordoma Foundation was chosen as one of the first three recipients of Donate Games funding.
Now anyone can make a difference and provide hope to chordoma patients simply by donating or buying games through Donate Games! Learn more » Doctor DNA
 New AARP TV documentary shows how Dr. Francis Collins, leader of the Human Genome Project, was instrumental in jumpstarting research on chordoma and other orphan diseases. The documentary features Simone and Josh Sommer with Dr. Collins at the NIH Chemical Genomics Center (NCGC) where every FDA-approved drug is being screened against chordoma cell lines to quickly identify new treatment options.
Learn how the NCGC project will accelerate the development of new treatments for chordoma. Story continued online » | The Chordoma Foundation needs your generous support to continue making rapid progress towards new treatments and a cure. Please donate today to invest in a future for chordoma patients. Donations are tax deductible and very much appreciated!  | Quick Links
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» Resources | Second Chordoma Community Conference Make a difference and get involved at the Second Chordoma Community Conference! Join fellow survivors, families and friends from June 26-28th in Bethesda Maryland to connect, learn and share with others in the chordoma community. You'll be the first to know about about new and exciting research from CF-funded scientists, upcoming clinical trials, and the new Chordoma Foundation BioBank. Come hear from a diverse panel of 8 experts including surgeons, radiation oncologists, medical oncologists, and basic scientists. This is your chance to ask the experts the questions you want answered.  Chris Austin, MD - NIH Chemical Genomics- Brian Harfe, PhD - University of Florida
- Norbert Liebsch, MD - Massachusetts General Hospital
- Dilys Parry, PhD - National Cancer Institute
- Vijaya Ramesh, PhD - Massachusetts General Hospital
- Chandranath Sen, MD - St. Lukes Roosevelt Hospital
- Neil Spector, MD - Duke University
- Jean-Paul Wolinsky, MD - Johns Hopkins University
There is still time left to register and scholarships are available for those with financial need. So go ahead and Register Today We hope to see you there, but if you can't join us you can still help someone else attend by sponsoring a scholarship. Become a sponsor by clicking here. Your contributions will help give everyone the opportunity to attend. For questions about the conference, sponsorships or exhibits
email: ') or call 919-809-6779 |
Chordoma Researcher Gets Prestigeous Award from ASCO Foundation On May 31st, University of Pittsburgh neuro-oncologist, and Chordoma Foundation Scientific Advisory Board Member, Dr. Deric Park received a $200,000 Career Development Award from the American Society of Clinical Oncology (ASCO) Foundation to study the efficacy of a new two-drug combination therapy for treating chordoma patients. Not only will Dr. Park run the second chordoma-specific clinical trial in US history, he is also the first chordoma researcher to receive an ASCO Foundation grant. While attending the ASCO Annual Meeting in Orlando, Josh and Simone Sommer congratulated Dr. Park on this significant award. According to Simone, "Deric is a chordoma research superstar." More details about this new clinical trial will be announced on June 27th at Second Chordoma Community Conference | Seeking the Cure: Researchers Get One Step Closer New potential therapeutic target identified for chordama  In two papers published in prestigious journals within the past two months, Chordoma Foundation funded researchers Dr. Vijaya Ramesh from Harvard and Dr. Adrienne Flanagan from the University College London both reported that a critical regulator of cell growth and proliferation, called the mTOR pathway, was activated in most chordomas. This significant finding could potentially lead to new treatment options for chordoma patients as inhibitors of the mTOR pathway are currently being tested in clinical trials for a variety of cancers.
Read more about this pivitol research and what it means for chordoma patients. Story continued online » The Chordoma Foundation sincerely thanks Dr. Ramesh, Dr. Flanagan and all of their collaborators for the important contributions they have made to our knowledge of chordoma, and for sharing their data openly with colleagues at the International Chordoma Research Workshops. Congratulations on these noteworthy publications! | Banking on a Cure Will biobanking change the world?  If the term biobank isn’t part of your vocabulary, that’s about to change – it has hit the national radar screen in a big way. In March Time Magazine compiled a list of “10 Ideas Changing the World” - you may be surprised to know that biobanking came in at Number 8, highlighting the growing realization that the future success of medical research, especially for cancer, hinges on increasing the supply of high quality biospecimens.
 After months of laying groundwork, the Chordoma Foundation is on the verge of launching a unique biobank of its own that will transform the entire field of chordoma research. All samples that enter the bank will be divided to the extent possible so that the same tumor can be used for many different types of analyses and distributed across multiple labs. Data generated on each sample will be aggregated to create a continuously growing data-set surrounding each sample in the biobank. A friend and advisor recently likened each sample in the biobank to a grain of sand that will seed the growth of a scientific pearl – with each additional layer of data the pearl grows in value. We are betting and hoping that these “pearls” will hold the key to a cure.
More details about the biobank will be announced at the upcoming Chordoma Community Conference. Read more about how we're gearing up to launch the biobank, and why it will transform chordoma research. Story continued online » | Jogging for Justin 5K Partay raises over $8,000! 8th grader Mattis Collier was there for her friend James Becherer when he lost his best friend, Justin Straus, to chordoma last September. As James' fourteenth birthday neared, Mattis wanted to do something special for James, so she helped him organize a birthday-fundraiser for the Chordoma Foundation in memory of Justin.  "Not only did we raise a lot of money, but we raised awareness about this awful disease. James and I believe Justin would have been proud because we are carrying out his message...we are persevering to cure Chordoma."
Read a run-down of the event from Mattis. Story continued online »
Since Justin's death in September 2008, over $152,000 has been raised in his memory to carry on his fight against chordoma. What an incredibly loved and missed young man! | Profile in Courage: Dr. Ed Les When the Physician Becomes the Patient  In 2007, Ed Les and his wife Sherri - medical school sweethearts - were living happily with their two young girls in Calgary, Canada. When Ed's persistent pain in the neck started affecting his mood, he became a pain in Sherri's neck and she insisted that he get checked out. "I thought at most we’d find some disc problems, bone spurs, or something like that in my neck. Well, we didn’t. I had a big tumour growing from my 39-year-old skull-base, which had pinned my brainstem against my skull. Suffice it to say, we got a crash course in the niceties of chordoma and its implications. I had a two-stage resection in Toronto, fought off meningitis and a few other complications, landed in Boston for eight weeks in the proton-beam rotisserie, and limped home to recover." Despite some lingering tumor and lingering symptoms, Ed has returned to the medical practice that he loves. Now he cherishes life more than ever with Sherri, and (now three) girls Megan, Taylor, and Peyton. This profile is Ed's firsthand account of what it's like when the physician becomes the patient. Read Ed's Story » | The Newest Member of Our Team A warm welcome to Laura Gemme!  April 15th, 2009 was a big day for the Chordoma Foundation (not because of taxes - those are due on May 15th for nonprofits) - it was the day that the Foundation hired it's first full time employee, Laura Gemme.
As administrative coordinator, Laura brings to the Foundation a breadth of experience and skills. She has worked in nonprofits for more than 15 years, covering a spectrum of areas including, operations, human resources, marketing and event management. Laura's main interest is in helping nonprofits to be effective in order to better serve their mission. Laura will help build much needed capacity that will allow the Foundation to continue to grow, while enabling Josh and Simone to focus more on driving research forward. With her energetic, positive and goal-oriented spirit, she is true to her name; a "gem" to work with. Her depth and breadth of experience, coupled with her heartfelt desire to help everyone in the Chordoma Community is a winning combination. Even her four year-old daughter, Gillian, is excited about helping the Foundation. Gillian has decided she will grow her hair for the Locks of Love program to help other children who have cancer. Come meet Laura in June at the Chordoma Community Conference! | |