Brooklyn event raises awareness about sarcoma and money for the Sarcoma Alliance by Arthur Beckert, executive director

Christina Moore contacted me two years ago, when she was competing for Miss Brooklyn. She wanted to use that forum to help everyone affected by sarcoma. Her aunt, Josephine Schiavo, had successfully battled malignant fibrous histiocytoma (MFH) and has been an inspiration, not only to Christina, but to her family and friends. (Josephine and Christina are in the photo on the left.)

Later, I received a phone call that she came in third but with a spirit not diminished, she still hoped to help us in the future. This year, she entered the contest again, and I received an excited call that she had won!

I detect a strong family trait in Christina and Josephine: positive attitude, never give up, and don’t look back.

On Feb. 12, I attended Cupid’s Cure, the first of a number of events Christina has planned for 2011 to raise awareness about sarcoma and celebrate Josephine’s spirit. The event in Brooklyn, one of the boroughs of New York City, brought together more than 200 people to honor Josephine and support the Sarcoma Alliance. It was a wonderful scene: Tables decorated with red and pink balloons, eight sunflowers (one for each person at the table), a table with beautifully presented raffle items, and a great dance floor and DJ.

Christina warmly welcomed everyone and thanked the many people who helped put together the evening. Josephine followed with a moving account of her diagnosis and treatment and the endless love and support she received from her family and friends. The evening continued with a lovely dinner, dancing and raffle. Prizes ranged from event tickets to jewelry, and an iPad. At the end, everyone left, having had a fun time and experiencing the love, warmth and affection from a community committed to helping and supporting one another. On behalf of the Sarcoma Alliance and all we help, thank you, Christina and Josephine.

Grant Awarded by Genentech

In January Genentech awarded a $15,000 grant to the Sarcoma Alliance to make improvements to our website. This follows a grant awarded in 2008. This grant will allow us to improve our chat capabilities so that we can periodically invite expert guest participants with a fully moderated discussion. We will also be adding a new care giver section and making improvements to the functioning of our Peer to Peer Program. Finally, we will be updating and reorganizing some of the content in other sections of our website. We are very excited and appreciative of Genentech’s ongoing support of our mission.

Trivalent Vaccine for Sarcoma Trial

MabVax Therapeutics is actively recruiting patients for a Phase 2 sarcoma vaccine trial who have recently been treated for metastatic sarcoma and whose status is “No Evidence of Disease” or NED. The patients in the study will be randomized to receive either a vaccine that is combined with an immune system stimulant or the immune system stimulant alone. The immune system stimulant is called OPT-821 and is an immunological booster. If the trivalent vaccine can stimulate the patient’s immune system to develop antibodies which recognize and target the GM2, GD2 and GM3 sugars that are over expressed on the surface of most sarcomas, then the patient’s antibodies could attack and kill any remaining sarcoma cells potentially preventing the recurrence of sarcoma. For more information about the trial, please visit the clinical trial overview at http://clinicaltrials.gov/ct2/show/NCT01141491?term=sarcoma+vaccine&rank=1 .

23andMe Achieves Milestone in Building Sarcoma Research Community and Announces Appointment of Sarcoma Scientific Advisory Committee

The following was adapted from a January 25, 2011 press release from 23andMe. For more information, or to inquire about joining 23andMe’s Sarcoma community please go to http://www.23andme.com/sarcoma.


Leading Personal Genomics Company Engages the Worldwide Sarcoma Community for Research and Welcomes Leading Sarcoma Researchers and Clinicians as Advisors

23andMe’s sarcoma research efforts are well underway with collection of both phenotypic and genetic data from 500 individuals diagnosed with sarcoma already completed. The company is half way towards its goal of building a sarcoma research community of more than 1,000 individuals. 23andMe has also completed its Independent Sarcoma Scientific Advisory Committee with the appointment of leading researchers and clinicians, including Robert Maki, MD, PhD, George Demetri, MD, Judy Garber, MD, MPH, and Mark Robson, MD.

“Members of our independent, external Sarcoma Advisory Committee bring unsurpassed expertise of sarcoma and cancer genetics to our research efforts,” said Anne Wojcicki, 23andMe co-founder and CEO. “We are confident that together, we will meaningfully advance our current understanding of sarcomas.”

Sarcomas are a rare group of cancers that arise in connective tissues (such as muscle, fat, cartilage, tendons and blood vessels) or in bone. It is estimated that there are approximately 13,000 cases of Sarcoma seen annually in the United States. This is an extremely small number compared to the total of more than 1.4 million people who are diagnosed with cancer each year in the United States. The small number of cases seen, the diversity in the biology of each type of sarcoma, and other variables make identifying and understanding causes of Sarcomas particularly difficult.

23andMe’s Sarcoma research efforts first began in April 2010, inviting current and former sarcoma patients to participate by being genotyped and completing surveys about their disease and treatment response through the 23andMe web-based research platform, under approval from an Institutional Review Board (IRB). Participants receive access to the full 23andMe experience, including information about their genetic ancestry as well as access to all 184 health and trait reports at no charge.

As 23andMe collects information regarding these individuals’ experience, environment and response to different therapies, it is anticipated that 23andMe will be able to combine this information with genetic data to find patterns that will help researchers better understand the biology of sarcoma and the impact of various treatments.

"We have already enrolled more than 500 individuals diagnosed with Sarcoma, passing the 50-percent milestone in our goal of building a sarcoma community of at least 1,000 individuals. Through our research platform, we are gathering valuable information about sarcoma and response to treatment from these individuals,” explained Amy Kiefer, 23andMe, Survey Research Manager, PhD.

“This collaborative project is highly innovative, linking sophisticated genomic analyses with patient-reported outcomes and clinical data in people who have had sarcoma at some point in their lives. It is a novel, multidimensional approach to understanding these complex diseases with a mixture of science, medicine and social media,” said George Demetri, MD, Director of the Center for Sarcoma and Bone Oncology at Dana Farber Cancer Institute and Sarcoma Scientific Advisor to 23andMe. “The members of the Sarcoma Scientific Advisory Committee are enthusiastic to advise 23andme to ensure the highest quality data can be generated through this interactive process which brings together current sarcoma patients, long-term survivors of sarcomas, physicians and scientists of several different specialties.“

About 23andMe’s Sarcoma Scientific Advisory Committee
The committee is comprised of independent, external academic advisors, including:

Robert Maki, MD, PhD, is a renowned Sarcoma clinician and researcher. Already a 23andMe advisor, Dr. Maki recently joined The Mount Sinai Medical Center as the Chief of the Pediatric Hematology/Oncology Division, and is also Medical Director of the Sarcoma Cancer Program at The Tisch Cancer Institute.

George D. Demetri, MD, has led the development of several practice-changing clinical research trials for sarcoma and serves as the Director of the Center for Sarcoma and Bone Oncology at Dana Farber Cancer Institute, as well as Director of the Ludwig Center at Dana-Farber/Harvard Cancer Center, and Senior Vice President for Experimental Therapeutics at Dana-Farber Cancer Institute in Boston.

Judy E. Garber, MD, MPH, is the Director of the Center for Cancer Genetics and Prevention at Dana-Farber Cancer Institute and an associate professor of Medicine at Harvard Medical School.

Mark E. Robson, MD, is the Associate Attending Physician of the Clinical Genetics and Breast Cancer Medicine Services at Memorial Sloan-Kettering Cancer Center.

To Our Friends of the Sarcoma Alliance

The following note and the story below was mailed out for our annual appeal in December. Thank you to all who donated to help us continue our mission of providing guidance, education to everyone affected by sarcoma.

The personal story in this annual appeal newsletter was written by my daughter Alison. She was only 13 when she was diagnosed with alveolar rhabdomyosarcoma, a dangerously aggressive cancer with only a 50 percent survival rate. Imagine the horror of flipping a coin to determine whether your child would live or die; that was what it was like for me 14 years ago.

Fortunately for our family, Alison was in the half of children with a good outcome. However, her story did not start out well. Like many others with sarcoma, she was misdiagnosed, delaying the start of treatment. Her initial surgery was done incorrectly, potentially increasing the risk of spreading the cancer. By extreme good luck and a lot of difficult research, we overcame this dreadful beginning by doing almost everything else correctly. We sought out a second opinion from a sarcoma expert and changed chemotherapy as a result. We found a surgeon who knew sarcomas and removed the tumor with clean margins. We traveled to have radiotherapy at a hospital with extensive experience in sarcoma.

It shouldn’t take blind chance or extensive research for a person newly diagnosed with sarcoma to obtain the best possible treatment. The diagnosis of a cancer you have never heard of is so horrifyingly numbing that it’s difficult to know where to turn. You feel hopelessly alone. And that’s why the Sarcoma Alliance exists: to provide hope; to empower the person affected by sarcoma; to help them identify the best places to obtain treatment; to provide grants to seek out second opinions from sarcoma experts; to connect them with others who know exactly what they are going through. And we provide all our services for free.

And that is why the Sarcoma Alliance is asking for your generous support to continue to provide these essential services. The Sarcoma Alliance is the only national organization whose sole mission is to provide information, guidance, and support to people affected by sarcoma. As the report by Arthur Beckert our Executive Director indicates, we have provided our services to people in all 50 states of the U.S. and in 21 countries around the world. It is only through past donations that the Sarcoma Alliance has been able to provide hope and information to thousands of people affected by sarcoma, letting them know You Are Not Alone.

Our best wishes to you and your loved ones for a happy, prosperous, and most importantly, HEALTHY 2011.

Joan Darling
President, Board of Directors

Ali's Story

I remember the night I walked into my parents’ bedroom at 10 o’clock and announced with fear and force, “I have cancer.” They looked at me as any parent would with a 13 year old daughter who was perfectly healthy and extremely active. But I had found a lump, and, for whatever reason, I knew what it was.

My late night announcement was followed by a visit to my doctor in an effort to appease me. Mission accomplished; I was diagnosed with a cyst. I remember expressing to my doctor, with a sigh, how relieved I was because I thought it was cancer. I was reassured that all the signs pointed to a cyst. The location, my age, the size, and no other symptoms. Several months later, when it hadn’t shrunk, I went in for surgery to remove the cyst. The following Monday my entire family was hit with the news that everybody (except me) had been wrong. It was cancer.

I was diagnosed with rhabdomyosarcoma, which had grown quite large in the time that had lapsed due to the misdiagnosis. It was contained within my pelvic cavity, and at stage 3 it was large, but somehow, luckily, it hadn’t spread.

Thirteen is a tough age to have cancer. For one, there’s the social component. I tried going to school after my first round of chemotherapy, but two hours into my first day back I realized that it wasn’t going to work. I couldn’t have asked for anything more from my friends and family. My friends scheduled all birthday parties and weekend get-togethers around my “good week” – the one week out of every three (or four) when my immune system and energy level was high enough to socialize. My family was willing to drive my anywhere, anytime. This included several weekend trips home to Lincoln Nebraska from my 2 month stay in Rochester Minnesota in winter blizzards and fog so that I wouldn’t miss any critical, life-altering, earth-shattering eighth grade social events. In retrospect I sometimes wonder if these drives were a greater risk to my health than the cancer itself. But on a serious note, these efforts meant a lot to me. Spending time with my friends helped me remember that there was more to my life than nausea and mouth sores and low platelets. Life didn’t have to be put on pause. I could still laugh until I cried with my best friend, stress over what to wear, experience my first crush.

And then there’s the hair… I remember the morning I woke up in the hospital a few weeks after my first round of chemotherapy, and, thinking nothing of it, ran my hands through my hair. When I pulled my hand away I saw that a large clump of hair had come with it. That was one of the first days I cried about any of this. I thought I wouldn’t care when my hair fell out, but seeing it there in my hand changed everything. I think that was when reality hit. This wasn’t a dream. This wasn’t a joke. This thing inside of me was going to change my life.

Thirteen is also a tough age because every child is at a different maturity level. I was definitely mature for my age. I completely understood what death was, that I had a legitimate chance of dying, and that critical decisions had to be made to provide the best possible chance to survive. I have amazing parents who fought tirelessly for me, always keeping me involved in the decision making process. The doctors, however, were another story. They were incredible doctors: considerate, compassionate, and dangerously intelligent. But I spent a lot of time convincing them that I was entitled to know what was being done with my body and my life. I know I made them see that my opinion mattered, and I hope that I taught them something about the likes of thirteen year old girls.

Overall I went through 12 rounds of chemotherapy, 28 doses of radiation, and 5 surgeries. I was treated at Children’s Hospital in Omaha Nebraska and the Mayo Clinic in Rochester Minnesota. After a year of treatment I was cancer free, and have stayed cancer free for almost 14 years.

Having cancer absolutely changed my life. I don’t think it changed who I am, but I do think it changed my view. I will forever be plagued by the side effects of the drugs that saved me, and I still get nervous when I find any lump or bump. But, most of all, I love and cherish the qualities I’ve acquired through the experience. It’s been said so many times in so many ways, but it’s best put in one word: Perspective.

I’ve since graduated from high school, college, and most recently law school. I’ve stood as a bridesmaid at some of my closest friends’ weddings, swam with dolphins, traveled to Europe and India, and cried over the loss of a loved one. I’ve experienced the thrill of getting my drivers license, falling in love, buying my first home, and walking down the aisle to say “I do.” I think all of these events would have happened regardless of whether the cancer had. But they were that much better after the fight.