Fourth Chordoma Community Conference March 22-24 2013 PARTICIPANT PROFILES Misha Angrist I am preparing a case study of the Chordoma Foundation for the Duke University Center for Public Genomics. I have already interviewed Josh Sommer at length and look forward to speaking with additional patients, researchers and clinicians. Blake Benner Spouse of chordoma patient, diagnosis date March 2012, chordoma in sacrum, mid spinal cord, neck, hips and right femur. Currently on Votrient. Surgery April 2012 to remove sacrum and two tumors on hips. Relapsed September 2012. __________________________________________ Tiffany Benner 31 years old, Chordoma patient, removed sacrum and two tumors on hips Aptil 2012, relapsed september 2012 with 9 spots on spinal cord, currently taking Votrient. ______________________________________________________ Sharon Berlan I am a woman who had a highly successful career in retailing which brought me all over the world and kept me very busy. My life has changed drastically. I was first mis-diagnosed in 2003, correctly in 2004. I have had multiple surgeris with various teams for Clival Chordoma, and in 2007 had Proton Beam in Boston. In 2009 a new cervical tumor was found. I opted for IGRT High Dose (one hour, one shot) and 3 yrs later its necrotic. I work on the Patient Education and Outreach Committee for the CF and was on the planning committee for this conference. Since its formation I have been very grateful for the CF and help however I can. Douglas Booth I am a clival chordoma warrior. I have been fighting this disease for almost four years now, with the tenacious aid of my loving wife, Julie. Josh and the Chordoma Foundation has become a lifeline for me. I am extremely excited to meet my fellow warriors, the Foundation staff, Board of Directors and dedicated leaders in the research for a cure. Julie Booth Christine Bowenkamp I am a retired nurse, counselor, wife, mother and volunteer. I love golf, bowling, travel, and planning fun trips for our large group of friends. After suffering from severe neck and shoulder pain and headaches for years, and being mis-diagnosed, I finally found the right neurosurgeon and was diagnosed with a massive Chordomas this fall. Unfortunately it pretty much destroyed my cervical vertebrae, and was pressing on my throat. I am currently undergoing six weeks of daily radiation with hopes to slow it's growth. The Foundation helped me learn about this disease, and gave me hope for a future. David W. Brown 81 year old, New England-reared ag economist who worked with universities and outreach programs in the U.S. South, Midwest, and about 25 developing countries. In 2001 I had radiation, some chemo, and 3 surgeries at Roger Williams Hospital, Providence, for Chordoma of the Sacrum. Some bowel and bladder after-effects. No sign of spread until 2006, when a Chordoma lump appeared in my right arm (triceps). This was removed. Narrow margins, but no sign of further spread since then (fingers crossed). Except for losing my wife last year, I'm in pretty good fettle ... am into causes related to the homeless, land and tree stewardship, and global concerns. Nadine Cordova On September 11, 2010, I was diagnosed with a Cervical Chordoma. I was scared and took it as a "sentence". Thankfully, I got in touch with other Chordoma survivors (who I now call family) through the Chordoma Foundation and Yahoo Support Group, who pointed me in the right direction. I opted to do a new treatment with IGRT instead of the proton beam/surgery/proton beam method. It's been a little over 2 years and my tumor is still stable, and no surgery is recommended. I am very hopeful with the advances in technology and treatment research intended for Chordoma, gratefully in part to the Chordoma Foundation and their perseverance. I am thankful for each and every blessed day I get to spend with my family and especially my little boy Eli. Virginia Daly Mother of Maureen Schroer, Chordoma patient, who was diagnosed March 2012. I live in Atlanta, GA, about 10 minutes away from Maureen, her husband and my two grandaughters. I spend a lot of time helping with my grandaughters Besides spending time with my grandauthers, I enjoy gardening and reading. I am originally from New York and love living down south. Dan Damien My name is Dan Ovidiu Damian, 30 years old from Romania, not married and no kids :) I am a software engineer. I am attending the conference as a patient since I want to find out more about this horrible disease I was diagnosed with 8 years ago, at the cervical spine (C2-C5). I have had 9 surgeries since then and a radiotherapy session. Peter Davidoff Dad, husband and businessman based in Boston. Boating enthusiast who gets to play with boats all year round as a business. 57 year old, coming to the conference as a patient along with the support of my wife. Clival Chordoma discovered and operated on in December of 1999. To date, no effects or regrowth of the tumor. Joann Fenili I am a 64 year old female who enjoyed working full-time and was looking forward to an active retirement in July 2012. I was diagnosed with sacral Chordoma this past January and have been under treatment at the Stephan L. Harris Center for Chordoma Care at Massachusetts General Hospital during this year. My treatment included radiation, tumor resection, and follow-up radiation that was completed on November 18th. My physicians were Drs. Francis Hornicek and Yen-Lin Chen. I have a husband and two sons, Michael, 42, and Jonathan, 37. My hobbies are genealogy and travelling. I am looking forward to my first grandchild, due this January, and travelling to Italy next October. Robert Fenili I am the spouse of a Chordoma patient. Gerald Fitz-Gibbon Active 50 something Company Director husband of Susan and father of three sons Oliver Freddie and William (16-21) who enjoys eating, drinking (moderately) long walks, theatre, ski-ing, sailing, log fires and our Spaniel - Oscar. Susan diagnosed with Chordoma within L5 in January 2008; underwent vertebrectomy at the Wellington Hospital London in February followed by course of radiotherapy. Recurrence in February 2012 in S1 area and in the Psoas/ Pelvic region. Surgical treatment but healing complications. Further recurrence in both areas noticed in November 2012. Cyberknife treatment scheduled for January 2013. Delighted to be attending the conference and to be inspired by many amazing people. ______ Susan Fitz-Gibbon I am a Mother of three boys - 21, 19 and 16, we all have an active and fulfilling life and enjoy many sporting, cultural and social activities together, as I have always been physically active I have a strong constitution and until 2007 have been healthy. Currently my business involvements are a Company Director of two business, am President Elect of ARLA, sit on the Board of Nfopp. I have a broad range of interests - photography, cooking, travelling, reading, visiting galleries/museum, walking our beautiful dog and socialising. I am blessed with an incredibly supportive husband and family plus wonderful friends who are always there for me. My condition showed itself in October 2007 when I was diagnosed with a slipped disc in my L5 after visiting the chiropractioner, nothing improved and following MRI's, biopsies and CT scans I was told I had a tumour in my spine. After my biopsies had been further analysed I was advised I had a rare cancer - chordoma. Much has taken place since then from a 13 hour operation involving a vertebretomy on my L5 with pedical screws followed three months later by radiotheraphy. In February 2012 I had a recurrence in my S1 and a further tumour (primary) in my left psoas muscle had to be removed - 5 operations later and two months in hospital I came home. Following both operations I had to learn to walk again and the recover has been difficult. In November 2012 I was advised the tumour had returned to my S1 and two tumours in my left psoas. I am now investigating cyberknife for treatment on the psoas and investigaing which drugs may be available to stem the growth of this inexorable disease. I am curently on anti inflammatories and pain killers. In 2007 after investigating on the internet charities relating to Chordoma I found there was nothing available, by 2012 the Chordoma Foundation was established and have been in dialogue with them for many months. Theresa Gallagher I am a three year Clival Chordoma survivor. I am a teacher by trade but have not been able to work in that field since my diagnosis. This will be my second Chordoma Conference and I am looking forward to seeing old friends and making new ones. Mary Grover Spouse of chordoma patient, Robert Grover, who passed away on April 13, 2011. Susan Isomura My husband Derrick died on Aug. 31, 2012, due to multiple regrowth of his clival chordoma. He had a 4 year battle, with 3 craniotomies and PBT in Loma Linda. I am following through with his wishes to attend as his plan was to be in Boston and he asked me to go in his place. Traci Jaroszewicz Daughter of chordoma patient, Robert Grover, who passed away on April 13, 2011. Marley Jay I'm a 30-year-old writer and reporter living in New York City. My younger brother Tyler was diagnosed with a clival chordoma in December 2006, and underwent surgery and radiation therapy as well as physical therapy in 2007. He experienced a recurrence and chemotherapy in 2008-09 and experienced a third and final recurrence just after his high school graduation in 2010.