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 . 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 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. He died in October of that year, and his family remains committed to keeping his memory alive through support to the Chordoma Foundation, scholarships, and other programs.

Bobbi Antonazzi Jensen Sacral chordoma resected 3/15/11, a few days before my 61st birthday, by Dr. Ziya Gokaslan and his team at Johns Hopkins Hospital. Currently on disability after a career in adult education, parish ministry and, mostly, corrections.

Susanna Johnson Hi, I'm a Chordoma survivor for over four years, I am a 41 year old, mother of three, stay at home mom, former Army officer, married, living in Northern Virginia. My kids would say my favorite hobby is to talk on the phone. My other interests are in anything that has to do with raising the quality of life for my family and myself - to include health and fitness, memory making, fostering relationships, and studying the bible. One day I hope to work again, either with fundraising, non-profits, voiceover acting, or whatever! I've had two spine surgeries (lumbar chordoma and one just for pain relief), and one thyroidectomy. I hope my next surgery is elective, if you know what I mean!

Norma Jones Patient, 2002 diagnosed with clival chordoma, have had 3 crainiotomies, one endonasal and a maxillotomy surgery. In 20009 had a recurrence and in 2010 had proton radiation at MGH in Boston. Met Josh and Simone Summers at NORD convention prior to the conception of the Chordoma Foundation and have been actively involved with the Foundation since they started the organization. Involved in the Peer Connect Program and on the Steering Committee for this convention..have attended all. Welcome.

Hans Keulen

With a backgroung in physics, Hans Keulen has been working in information and communications technology (ICT) for most of his life. As co-owner of a mid-size ICT company (DataBalk, now Cegeka NL), he served as CTO and was responsible for business development. In 2008, he retired due to health issues. In 2009, after several mis-diagnoses, he was finally discovered to have a clival chordoma that was surgically removed. In 2011 Hans had a recurrence that is currently being treated in a clinical trial. He co- owns a few small firms where he is involved in strategy, innovation and product evangelism. He is also dedicating a considerable amount of his time to the European expansion of the Chordoma Foundation and serves as the European Liaison for the Foundation. He lives with his wife Marja and three children in in the rural village of St. Oedenrode in the The Netherlands.

Lotte Keulen

Astrid Krueger

I’m 54 and my husband Ewald is Chordoma Patient since nearly 4 years with a lumber spine tumor. Surgery and radiation would not help. 3 years of IMATINIB: September of last year a metastase like a tennisball was found in his left pelvis. Surgery is impossible. we hope for radiation in the new ION GANTRY in Heidelberg

Karen Lopez-Bunk

Karen Lopez-Bunk is a Nurse & Case Manager at The University of Proton Therapy Institute who cares for all adult patients with chordomas who come for treatment.

Holly Lund

59 year old . Live in Minneapolis, Minnesota. Diagnosed cervical chordoma 2009. Had surgery at Mayo Medical Center followed by proton beam therapy at MGH.

Kathleen Milczarski

I was 51 years old when running, work and life in general had become a struggle. On February 18, 2009, I was diagnosed with cervical spine Chordoma (C2, C3). The surgeon could not remove all of this extensive tumor and proton radiation was recommended out of state (I live in Michigan). Miraculously, one week before I was to begin treatment, it was postponed. Thankfully, I then found Dr. Liebsch at Massachusetts General Hospital who advised state of the art surgery in Switzerland. After battling with the insurance company for approval, I had huge surgery on December 8 and 10, 2009. Thankfully again, all of the tumor was removed by this superb surgeon and I was kept intact. In the spring of 2010, I had photon and proton radiation at MGH and I am very fortunate to have had no recurrence of the tumor. With God's help and the prayers and support of many, my family and I made it through all of this.

Rosario Paredes Puiggari

Carola Puiggari

Adriane Rothstein

Educator (independent schools), wife (he's a good guy), mom (of a 14 year old swimmer) chauffeur (see previous), loves Labradors, yoga, reading, politics, old movies, and travel seeks: (now, it gets interesting) people who will not give up, who live courageous lives, who give and foster support, and finally, who will fight to find a cure for chordoma. It is an honor to be on the Steering Committee for this conference, and an honor to be with so many good people.

Misty Sack

Parent of Chordoma Champ. Susanna Johnson, privileged to work with her on this conference, and cheer her on through major surgeries, radiation, therapies, and recovery. i'm semi- retired from a rewarding career with Job Corps, and operating our big NY farmhouse as a B & B for 11 years. Today, we've moved to a little VA farm in the Blue Ridge mountains.

Gary & Karen Sain We are attending the conference as parents of a chordoma patient. Our son Aaron was diagnosed at the age of eleven with a clival chordoma in November of 1997. Aaron underwent many surgeries, both major and minor, and received proton beam radiation therapy at Loma Linda, CA. After a courageous seven- year battle with this disease, Aaron died at the age of eighteen in August of 2004. Through the CF, we have come to know and love many within the chordoma community. The best way we know to honor Aaron's life is to commit ourselves to helping find a cure for this disease.

Robert Schoelkopf

I am a physics professor and chordoma survivor. I was diagnosed with thoracic chordoma in Feb of 2010, and had high-dose radiation followed by en-bloc resection at Johns Hopkins in May 2010. This was a tough road, followed by some struggles with chronic pain. But so far I have had three years of clean scans, everything is going well, and I am back to enjoying my family, my career, and my life.

Maureen Schroer

40 year old, mother of two girls, married to a firefighter, live in Atlanta, GA. Diagnosed with clival chordoma March 2012. Surgery at Emory Hospital in Atlanta, followed by 8 weeks of proton beam radiation at Mass General which was completed September 2012.

Robinson Strauss

I work at a law firm in NYC with keeps me quite busy. I grew up in , not far from Boston. My role here is a caregiver to my wife Sharon Berlan. I have seen her through many a surgery/treatment/recovery and been to most of the past conferences. I firmly believe we can find some treatments if the CF has the funds to do it.

Michael Torrey

Father of 2 teenage girls! Home designer and builder. Every Day is a blessing to appreciate and enjoy... !

Lisa Vanelli

Daughter of patient, Robert Grover, who was diagnosed with thoracic chordoma (T-9 to T-11) in 2006. Despite surgery, intraoperative radiation and proton beam therapy, he had a recurrence 3 1/2 years later. He took Gleevec and then had another surgery but his disease progressed and he passed away on April 13, 2011.

David Walton

Patient: Clival

Toni Walton

Caregiver