Monday, December 19, 2011

U.S. Rep. Kathy Castor gives us a holiday gift

By Suzie Siegel, board member

U.S. Rep. Kathy Castor, D-Fla., told the Sarcoma Alliance that she will introduce a resolution in January to name July as Sarcoma Awareness Month.

“Sarcoma touches the lives of thousands of people throughout the United States each year, but unfortunately, many people do not even know about this devastating form of cancer," Castor says. "I hope that by designating July as Sarcoma Awareness Month we bring more attention to this disease and continue working to find a cure.”

She's my representative, and I had asked if it would be possible to get the ball rolling before July to give advocates time to prepare events. With a Congressional resolution, it would be easier to get sarcoma added to calendars and other lists by organizations, institutions and the media.

Suzanne Leider, the founder of the Alliance, had proposed a Sarcoma Awareness Week for June 10-16 in 2001. CancerSource and collaborated on an event. Eventually, the week expanded to a month. Other nonprofits, such as the Sarcoma Foundation of America and Sarcoma-UK, and sarcoma centers, such as the Huntsman Cancer Center in Salt Lake City and Moffitt Cancer Center in Tampa, also adopted June as a time to raise awareness.

Meanwhile, Bruce Shriver of the Liddy Shriver Sarcoma Initiative started an International Sarcoma Awareness Week in July.

In 2006, I began asking nonprofits why we couldn't pick one month that we could all recognize. Because Bruce would not budge from July, the Alliance and others agreed to go with July as Sarcoma Awareness Month in 2007.

Now, I don't know anyone in the field who disagrees with July.

I asked Rep. Castor if she would introduce a resolution because she co-founded the bipartisan Children's Health Care Caucus. Although sarcoma represents 1 percent of cancers in adults, it's 15 percent of those in children. The National Cancer Institute reports 13,800 people were diagnosed this year.

"The number keeps going up," says Alliance President Joan Darling. Nevertheless, the figures may be low because the government often lumps sarcomas with carcinomas. For example, she says, it tracks Kaposi's sarcoma, which is linked to AIDS, but sarcoma that starts in the breast is grouped with more common types of breast cancer. In contrast, the American Cancer Society separates the different subtypes of sarcoma in children, which makes it harder to see the impact of sarcoma on young lives.

Her daughter was diagnosed with an abscessed cyst at age 13. After surgery, the pathology report revealed alveolar rhabdomyosarcoma. "Her pediatrician had never seen sarcoma before." A correct diagnosis is vital to treatment, Darling says, and her daughter did get the help she needed.

"Proper treatment doesn't just help patients. It also saves taxpayers," she says. "Why waste millions on less-effective or more toxic treatment?"

In his years at Memorial Sloan-Kettering Cancer Center in New York, renowned researcher Robert Maki estimates 10 to 15 percent of the patients who had been diagnosed elsewhere had at least a minor change to their diagnosis when Sloan tested their tumor. This year, Maki, MD, PhD, became chief of the Pediatric Hematology/Oncology Division and medical director of the Sarcoma Cancer Program at Mount Sinai Medical Center in New York.

Many sarcoma patients have never heard of anyone else with their cancer. Their doctors may not know all the treatment options or that sarcoma nonprofits exist. Doctors may not refer patients to oncologists who specialize in sarcoma.

Dr. Maki contrasts sarcoma awareness with awareness of breast cancer: A person can have a 10-centimeter lump on his leg and not suspect cancer. “But if a woman has a small lump in her breast, boom, it’s out,” he says, snapping his fingers.

Unlike more common cancers, sarcoma has had few champions because it's rare and aggressive, says Joni Freedman of Palm Harbor, Fla., who was thrilled to hear the news about Rep. Castor.

"It gives us all hope. It was time for someone of her stature to recognize the thousands of us out there who have never had a voice before," says Freedman, who helped manage the sarcoma mailing list on the Association of Cancer Online Resources. The longtime advocate has survived 15 years with fibrosarcoma, but the cancer has now spread to bones throughout her body.

Dan Schultz of Bryn Mawr, Penn., contacted the Sarcoma Alliance last July, offering to help get recognition for Sarcoma Awareness Month. His doctors had found sarcoma throughout his body; it's considered undifferentiated because it does not fit into one of the more than 50 subtypes of sarcoma. He has undergone grueling chemotherapy, but his options are limited due to the current shortage of Doxil.

The photo shows Dan surrounded by his daughter, Madelyn, in goggles and his triplets: Sadie in the green PJs, Avery in red, and Quinn in blue.

Schultz hopes people will ask their U.S. representatives to support Rep. Castor's resolution. (In the top right of this page is a way to search for representatives by ZIP code.)

"In a time of so many challenges in Washington, give thanks this holiday season for efforts by Congress to come together for a great cause," he says. "This resolution, if passed, would heighten awareness of sarcoma in a community without strength in numbers due to the rarity of the disease."

I put out a news release on this subject if anyone would like to see that.

Monday, December 12, 2011

Tips for supporting cancer patients online

Telling cancer patients to fight, pray or stay positive can hurt more than help.

“Don’t offer advice unless someone asks for it,” says Margaret Price, a social worker at the Moffitt Cancer Center in Tampa. She has run cancer support groups for 15 years.

“You’re welcome to say what helped you,” she says. “But if you tell people what they should do, they may feel that you don’t want to hear about their doubts, fears, anger or despair.”

“Some people may blame themselves if their cancer comes back and spreads,” says psychologist Karen Milo (in the photo). “They may think they didn’t pray hard enough, fight hard enough or stay positive.” She worked at Moffitt and continues to see cancer patients in her private practice.

Members of the Sarcoma Alliance have helped create support groups for sarcoma patients. Because sarcoma is a rare cancer, however, it can be hard to get enough people in the same place at the same time. That’s why the Alliance also offers online support: a Facebook page, discussion board, peer-to-peer network, live chat room, YouTube channel and this blog.

In an in-person support group, a trained facilitator can lay down ground rules and gently steer the conversation if it takes an unhelpful turn. Because online support rarely has that much guidance, we've developed the following suggestions, in consultation with Price, Milo and other professionals:

-- Feel free to talk about how your beliefs have helped you, but don’t assume your beliefs will comfort others. For example, Price says, you might say how prayer helped you or welcome prayers from others, but don’t tell them that they need to pray or keep the faith. That can silence those who are not religious or those who want to talk about fears and doubts.

-- Beware the “tyranny of positive thinking,” writes psychiatrist Jimmie C. Holland in her book “The Human Side of Cancer.” It’s great if people can enjoy life despite their diagnosis and treatment. But telling people they need to stay positive, or that a positive attitude will help them survive, can keep them from expressing “negative” emotions. That’s not healthy, writes Holland, who pioneered psychosocial treatment for cancer patients.

“Research shows that a positive attitude doesn’t actually help cancer patients live longer,” Price says.

-- Think twice before comparing cancer to war. This metaphor has been around for a long time, and it works for some, but not others, says Price, who spoke on the topic at a Moffitt conference this year. Some people prefer to work on healing and acceptance in their cancer journey. If cancer is a fight, then it will have winners and losers. People may feel defeated if their cancer advances, she says, with little interest in hospice or other help for the time they have left.

“The rest of a patient’s life is often disregarded or put on hold because all resources must be marshaled for the war effort,” she says. “This intense focus may serve as a barrier to alternate understandings of one’s life in the context of profound illness.”

Patients have a right to decide when they want to stop a particular treatment or all treatment. This doesn’t make them any less courageous, she adds.

-- Don’t give medical advice. You can discuss your own experiences and interests, but remember that cases are different. This is especially true for a rare cancer like sarcoma. The chemo that worked for you may not be appropriate for someone else, for instance.

-- Don’t make a major change in your diet or take supplements without consulting your physician. Raw fruits and vegetables can be risky for chemo patients with low white-cell counts, for example. Like conventional medicine, herbs can have side effects. Social worker Tom May, program director for the Cancer Support Community-Redondo Beach in Los Angeles County, says he often hears people tell others that they can cure themselves if only they take X or eat Y.

-- Don’t monopolize conversations.

-- Avoid partisan politics.

-- Keep in mind that it’s easier to misunderstand someone online than in person.

-- Try not to be alarmed at the experiences of others. Support groups tend to attract the newly diagnosed, those with advancing disease, and those with physical impairments. You're less likely to meet people who were treated years ago, whose cancer has not returned, and who can still do whatever they did before their diagnosis.

Thursday, December 8, 2011

Register for telephone workshop on treatment updates

Cancer Care will hold a free workshop on the latest treatments for sarcoma Thursday from 1:30 to 2:30 Eastern time. Speakers include Dr. George Demetri, Harvard; Dr. Jeffrey Wayne, Northwestern; Dr. Tom DeLaney, Massachusetts General Hospital; and Cancer Care Director Carolyn Messner.

Register online or call 1-800-813-4773. You can hear this workshop on the phone or an online webcast. If you are not able to participate, the workshop will be available later by calling 1-888-337-7533 or going online. For more information, visit Cancer Care's website.

Thursday, November 3, 2011

A Study of Trabectedin or Dacarbazine for the Treatment of Patients with Advanced Liposarcoma or Leiomyosarcoma

Johnson & Johnson announces a clinical trial.

Johnson & Johnson Pharmaceutical Research & Development, L.L.C. and PharmaMar are conducting a Phase 3 clinical trial for trabectedin or dacarbazine in patients with liposarcoma or leiomyosarcoma. This is a randomized (study drug assigned by chance), open-label (all patients and study staff know the identity of the assigned study drug), active-controlled (comparing to a different drug used for the same condition), parallel-group (different treatment groups continue with separate treatments throughout the study), multicenter study. This study will be divided into three phases, screening, treatment, and follow-up. During screening, potential patients will be assessed for study eligibility after providing signed informed consent. During the treatment phase, patients will receive study drug once every 3 weeks, until disease progression or signs of toxicity. Assessments will be performed to evaluate the effectiveness of the drug, and patient safety will be monitored. During the follow-up phase, after the last dose of study drug, clinical outcomes for patients will be evaluated. Trabectedin will be administered at a dose of 1.5 mg/m2 through a catheter into a large vein as a 24-hour intravenous (IV) infusion, once every 3 weeks, until disease progression or signs of toxicity. Dacarbazine will be administered at a dose of 1.0 g/m2 as a 20-minute infusion, once every 3 weeks, until disease progression or signs of toxicity. For more information on this study, please visit or (Identifier # NCT01343277).

Saturday, October 22, 2011

Second opinions at multidisciplinary centers

Many people with sarcoma could live longer and better lives if they saw a sarcoma specialist sooner. That’s why the Sarcoma Alliance lists multidisciplinary sarcoma centers and gives grants to those who have to travel to get a second opinion.

Travel is common because more than half the states in America lack a multidisciplinary sarcoma center that treats adolescents and adults. Parents may need to travel to get their younger children seen, and they also can apply for grants, but they have more options.

“My feeling is that any pediatric hospital is suitable for the three common pediatric sarcomas: rhabdomyosarcoma, osteosarcoma and Ewing,” says Alliance President Joan Darling, a volunteer with the Children’s Oncology Group, which has a map of its member hospitals.

Because there is no official designation or board certification for a “sarcoma specialist,” people may define it differently. In 2004, the National Cancer Institute convened the Sarcoma Progress Review Group, which recommended patients be treated at multidisciplinary sarcoma centers, and it listed criteria for the centers. Here is the Alliance’s updated version:
• A sarcoma medical group consisting of all specialties, including surgical, orthopedic and medical oncologists; radiologists; pathologists; and oncology nursing as well as rehabilitation services.
• At least one group member who belongs to a sarcoma-oriented medical organization, such as the Connective Tissue Oncology Society (CTOS).
• Publications concerning sarcoma in peer-reviewed journals.
• Sarcoma conferences (e.g. Tumor Board), where sarcoma group members meet at least once per month to discuss patient care issues.
• At least 100 sarcoma patients seen per year.
• MRI imaging available; PET scans desired.
• Patient enrollment in clinical trials.
• Strong support personnel such as social workers, psychologists and psychiatrists.
• Sarcoma support group desired.

“Since there are approximately 50 types of sarcoma, accurate diagnosis by a world-class pathologist is the first step in an optimal treatment plan. Surgery, radiation therapy and chemotherapy are all critical approaches toward treatment of the primary tumor, prevention of tumor spread, and therapy of sarcoma even after it has spread to other sites. Radiologists are key to diagnosis, recurrence, and assessment of response to therapy. Rare diseases such as sarcoma are best managed by an experienced multidisciplinary team at a comprehensive cancer center such as The Sylvester Cancer Center in Miami,” says Jonathan Trent, MD, PhD, a sarcoma medical oncologist who recently moved to Miami from the M.D. Anderson Cancer Center in Houston.

CTOS and the Musculoskeletal Tumor Society will hold a joint annual meeting this week, Oct. 26-29, in Chicago. Dr. Trent will present research there. The meeting will draw hundreds of sarcoma experts from around the world, along with volunteers from the Sarcoma Alliance and staff from other nonprofits. Ironically, Illinois does not have a multidisciplinary sarcoma center, according to Alliance criteria. But the Chicago area does have sarcoma doctors who participate in clinical trials.

Across the country, many patients fail to get state-of-the-art care. They may not know that sarcoma specialists and multidisciplinary centers exist. Or, they may lack the desire, time or money to travel to one, the Progress Review Group report says.

“Additionally, physicians and surgeons in small- and moderate-sized hospitals often want to maintain control of patients … for economic and other reasons,” the report says. “However, many physicians do not appreciate how complex the care of sarcoma patients has become and are not aware of the many alternative care strategies available.”

Especially with a rare cancer, most doctors will not mind if a patient seeks a second opinion. It's a bad sign if a physician is offended. Sarcoma centers allow patients to schedule appointments without a referral from their current physicians, although some insurance plans may require a referral for reimbursement. Sarcoma centers often can help patients with insurance questions, as well as travel plans.

After getting a second opinion, some patients may choose to get part or all of their treatment closer to home, with a doctor in the sarcoma center consulting with the local doctor. If nothing else, a second opinion may reassure patients that they are getting the best treatment available.

Wednesday, October 19, 2011

23 and Me’s Sarcoma Research Continues

One of the 23 and Me scientists has been analyzing sarcoma data with the help of Drs. George Demetri and Bob Maki. Thus far, there are no specific regions that may be considered uncontroversially “genome-wide significant,” but a number of interesting regions appear to have suggestive associations and may become genome-wide significant with additional data. Because of the promising nature of their analysis, they are still interested in having more genetic material to analyze. A simple saliva sample is all that is needed. More people = more power for the research.

While they are still recruiting people with any sarcoma diagnosis into the community, they are particularly interested in increasing participation from individuals with the following subtypes:

· leiomyosarcoma

· uterine leiomyosarcoma

· osteosarcoma

· chrondrosarcoma

· liposarcoma

· endometrial stromal sarcoma

· fibrosarcoma

· synovial sarcoma

For more information please read:

Friday, October 7, 2011

Brush Dance sells holiday cards to benefit the Alliance

If you haven't purchased holiday cards yet, consider sending some that not only express the joy of the season, but also support a great cause. Brush Dance has several great looking cards that support the Sarcoma Alliance, and through Oct. 13, shipping is free. Brush Dance donates a portion of each box sold to the Sarcoma Alliance.

The design at the left is here. Or, see the snowman, reindeer, ornament or stocking.

Tuesday, October 4, 2011

Sarcoma Alliance updates directory of nonprofit organizations

Since 2006, the Alliance has maintained a directory of U.S. and international sarcoma organizations, including their mission statements, accomplishments and contact information. The 2011 directory is here.

The directory helps nonprofits cooperate and collaborate. Sarcoma patients and their families and friends also can use it to find organizations that serve their needs. People may find one nonprofit that does everything they want. Others will seek different things from different groups.

Cancer nonprofits can be divided into those that provide direct services, those that concentrate on raising money for research, and those that do both. The Alliance fits into the first category. It offers guidance, education and support on its main website, with more information each month. A peer-to-peer network, live chat room, blog, Facebook page, YouTube channel and discussion board let people support one another and share information. The Alliance also helps start sarcoma support groups, and provides financial assistance to patients seeking a second opinion from sarcoma specialists.

Although the Alliance advocates for more research and encourages people to consider clinical trials, its goal is to help people right now. Many patients could live longer and better lives if they got the correct diagnosis and access to more effective treatment. But many don’t because doctors who lack expertise in sarcoma treat them, at least initially.

Of the nonprofits that fund research, some give money to particular doctors and scientists or to particular institutions. Some have medical advisory boards that review grant proposals and pick the ones they consider best. Some fund basic science while some pay for clinical trials. Some finance research on sarcoma in general while others aim at a particular subtype, such as leiomyosarcoma.

Newly diagnosed patients can get overwhelmed searching the Internet. The Alliance recommends: Take a deep breath and then start a list of the nonprofit websites you visit and what they offer. Note which ones you like and dislike and your reasons, such as: “confusing.” Keep in mind that an organization that confuses you in the beginning may make more sense later. In other words, your knowledge and needs are likely to change over time.

If you can afford donations, don’t forget the nonprofits that inform and support you. If you prefer to donate for research, are you hoping that your money will help find a cure for you? If so, you may want to look at the time it takes to bring a new drug to market and choose research that is further along. But the timeline doesn’t matter as much if you simply want to support scientific discoveries aimed at ending sarcoma one day.

Please contact the Alliance to add a nonprofit to the Directory of Sarcoma Patient Advocacy Organizations and Foundations or to update an existing listing.

Thursday, September 29, 2011

Camaraderie on the beach

By Suzie Siegel

For the first time, I flew to Los Angeles to see our Ocean of Hope team compete in the Catalina Classic Paddle-board Marathons last month. I discovered that you don't see much paddling from the beach, but you do have plenty of time to talk to survivors and supporters.

Some of us had never seen other volunteers in person. Some stretched out on beach towels and under umbrellas. Others worked behind the tables laden with food and O2H merchandise. (In the photo above, Board President Joan Darling; her son-in-law, Dan Olig; and survivor Amy Regenstreif relax before the work starts. The next photo shows past Board President Ellen Silver and survivor Christine Tope.)

People who stopped by got a quick lesson on sarcoma and the Sarcoma Alliance. We also helped educate people on cancer in general.

For a while, I stood out in the sun, selling raffle tickets for the beautiful blue board donated by master board shaper Joe Bark. I caressed it as if I were Vanna White on "Wheel of Fortune." I also sold jewelry -- back home, I sell donated items to raise money for the Alliance.

Paddlers raise money through O2H, as do sarcoma survivors, family members and friends. The series of ocean races known as O2H is the biggest fundraiser for the Sarcoma Alliance. It raised $50,000 this year, bringing the 12-year total to $600,000. This year, Mike Rogers was the biggest fundraiser, bringing in $17,730. He's in the photo below.

A group of us would run down to the water whenever the announcer said one of our four guys had finished. I felt especially happy when I heard Mike’s name announced because he had been so worried that he wouldn’t make the 32 miles to Manhattan Beach. He’s our oldest paddler, and he was still healing from injuries. The picture at left shows him at Palos Verdes.

“It was 8 hours of hell.” The water was choppy, and his muscles were cramping. “I felt bad because I knew people were on the beach, and all I could do was go past the flag, do a U-turn and get on the boat with towels, and shake.

“I had people to help and not let down, and even being an elder paddler is no excuse to stop. … My Mom was on the pier to cheer. I was seeing double at that point and was sore and cold. She said, ‘Well done, you finished. Now what?’ Redefine my goals and raise a lot more money next year to help.”

If you or your loved ones raise $3,000, a bright sticker with your name on it will be affixed to a board. Mike had Tracey Talley’s name on his board. Steve Shikiya had Josephine Schiavo. Joel Pepper had the names of Wendy Sommers and Susan Bohardt on his board. He's pictured with Bob Bohardt and his daughters, Cara Kohlrieser and Julie Beam, both RNs, at left. Phil Ambrose is in the photo at right, with Fred Sardisco, O2H co-captain. Phil had Suzanne Leider and Bob Chambliss. (I'm way

late in profiling Bob on our site. He was the only sarcoma survivor to paddle in O2H, and he was a terrific supporter of the Alliance and others with sarcoma. His mother, Kathy, also served on our board.)

Joel came in seventh in the stock board division. The other three paddlers were in the unlimited division, with bigger and faster boards. Steve was 28th, Phil was 51st and Mike was 57th.

To win a raffle, luck helps, but buying a bunch of tickets helps even more. Steve gets that – and the paddleboards. “He won the Hennessey's paddleboard raffle and the O2H raffle. Crazy!” said Aimee Spector, co-captain of O2H. He's in the photo below.

Barney Tong is the offical O2H photographer. For more photos, go to Picasa.

In the photo below, left to right, on the front row, are: Laura and Fred Sardisco, Aimee, Cara and Julie. Standing are: Suzanne's brother, Philip Leider, board member; board member Marites Tullius, a nurse practitioner and friend of Suzanne's; board member Dave Murphy, whose wife, Piera, died of sarcoma; nurse practitioner Betsy Haas-Beckert and husband Arthur Beckert, executive director; me; Bob; Suzanne's mother, Sharon Leider; survivor Alan Nishio; a person I can't identify; and survivor Kendra Krause between board member Ali and her husband, Dan. Not pictured are survivor Kelly Flynn and Kendra's husband, Brian.

Wednesday, September 28, 2011

Lanakila women win again and again!

There's no stopping the women from the Lanakila Outrigger Canoe Club who compete for the Ocean of Hope, a series of ocean races that raise money and awareness for the Sarcoma Alliance.

The women's team won first place Sept. 10 in the U.S. Outrigger Championships for the second time in a row. The canoe club is based in Redondo Beach, and the 27-mile race starts in Newport Harbor and ends in Avalon on Catalina Island, all in Los Angeles County.

"It was a very hard race. The conditions were on the ama [outrigger float] side the whole time, and our team had to slog through wind chop and unfavorable swell direction to make it to first place," says Aimee Spector, O2H co-captain. "We beat the second place team by four minutes."

In addition to Spector, the team consisted of Jeane Barrett, Jill Schooler, Dani Bell, Jean Geddes, Kellie Lancaster, Theresa Connelly, Laurie Parker and Lise Fernow. O2H members in two Bradley canoes who raced in that division were: Dawn Suskin, Heather Suskin, Katy Arnold, Agnes Regeczkey, Tanya Muhle and Nancy Hu.

"Our Bradley teams got first and fourth place medals, and all of these teams had O2H team members in them," Spector says. "I am sending out a final thank-you email to supporters to update them on our win and to invite people to donate a final time for the year."

The O2H team also took first place Sept. 17 in the Pailolo Maui to Molokai race in Hawaii. Spector holds the trophy in the photo on the left. On the same day, her husband, Kelly, and Alliance board member Dave Murphy gave out information on sarcoma, sold gear and accepted donations at Hennessey's World SUP and Paddleboard Championships in Hermosa Beach, Calif.

Although the season ended this month, you can still donate on behalf of the paddlers here. Mark your calendars for the Power of the Ocean – Ocean of Hope Gala on Jan. 21. It will raise money specifically for Hand in Hand: the Suzanne R. Leider Memorial Assistance Fund, which offers financial assistance for second opinions by reimbursing expenses related to travel, phone bills, costs of the evaluation, and related expenses.

Tuesday, September 27, 2011

Sarcoma in children and young adults

Sarcoma represents roughly 15 percent of all cases of childhood cancer diagnosed each year, says Joan Darling, president of the Sarcoma Alliance. But you might not know it by the way statistics have been presented during Childhood Cancer Awareness Month.

The American Cancer Society lumps different types of leukemia together, for example, but separates different types of sarcoma. That makes it harder to see the impact of sarcoma on young lives.

But Darling sees it. Since 2001, she has volunteered as a patient advocate with the Children’s Oncology Group (COG), the cooperative that designs and implements clinical trials for childhood cancers. A biologist who lives in Lincoln, Neb., she also helps manage the Rhabdo-Kids mailing list for the Association of Cancer Online Resources.

Darling sees more than statistics – she sees her daughter, Ali, diagnosed with rhabdomyosarcoma at 13, now a young lawyer on the board of the Sarcoma Alliance. Here’s an excerpt from her daughter’s story:

“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.”

The Alliance plans to expand its sections on children and young adults as well as adding more personal stories.

One will come from Joanna J. Burgess, who won the Great Comebacks Award, South Region, this month. She was diagnosed at age 3 with rhabdomyosarcoma and got a urostomy to replace her bladder. Radiation therapy caused colitis, and she later had to have a colostomy. She became a registered nurse who specializes in wound, ostomy and continence care.

“My efforts to help others have been a passion and an important part of my own recovery,” says Burgess of Apex, N.C. “From my experience, I think I understand the special challenges people face when they are living with these diseases and when they have ostomy surgery. I want people to know that someone understands what they are going through.”

Ashley Grennell of Groveland, Fla., hopes her story will help others see that they can live every day to its fullest despite a bad prognosis. Diagnosed with a sarcoma called malignant peripheral nerve sheath tumor, she went into hospice this month at age 26 after multiple surgeries and rounds of chemotherapy and radiation.

“I knew four years ago that we’d never get ahead of it,” says Grennell, whose last wish is to find the money for a funeral. “But I had four more birthdays, four more Christmases, four more years with my family. It was worth it.

“People always ask me, ‘How do you stay so positive? Every time I see you, you have a big smile on your face.’ You have two options. You can curl yourself in a ball, be miserable and waste your life, or you can say, ‘Yeah, this is the hand I’ve been dealt.’ You deal with it, and you live your life.”

Thursday, September 8, 2011

Lanakila paddlers go for another win

The women's team from the Lanakila Outrigger Canoe Club, which took first place last September, hopes to win again this Saturday, when they race in the U.S. Outrigger Championships. For sarcoma patients, however, they're always winners because they participate in Ocean of Hope, a series of ocean races that raises money for the Sarcoma Alliance. The women hope to raise $10,000 this year.

"The U.S. Outrigger Championships, held each year at the end of our paddling season, has over 1,000 paddlers from everywhere in the world competing in what is the best, the most competitive and the most exciting outrigger event in California," says Aimee Spector, steering in the photo on the right. "The women's race starts in Newport Harbor and finishes 27 miles later in Avalon on the island of Catalina."

The race is in Los Angeles County, and the Lanakila club is based at Redondo Beach's King Harbor, also in the county. In addition to Spector, team members include Katy Arnold, Agnes Regeczky, Jean Geddes, Theresa Connolly, Maki Miyazaki, Heather Suskin, Dawn Suskin, Suzanne White, Nancy Huh, Lisa Harden, Jessie Kennedy and Tanya Muhle.

Spector, captain of the Ocean of Hope team, joined O2H five years ago.

"Aimee got our canoe club, Lanakila, involved in Ocean of Hope and it seemed to me like a great way to add something meaningful to our training," says Arnold, in the Kaiwi Channel Relay in the photo above. "I started fundraising, and the support I got from friends, family and acquaintances was overwhelming, so I continued to fundraise every year, and now do it as part of my oc1 [outrigger canoe – 1 person] races in the spring. I like paddling outriggers because I love water sports, the ocean, and there is nothing like riding the swells in the open ocean, especially in Hawaii. It is truly exhilarating."

Geddes says she has learned more about sarcoma, including that animals can get it, too. In fact, it's a particular problem for large-breed dogs.

"Being a part of this team can help raise awareness about sarcoma cancers affecting all parts of the population, human and animal, and to raise money which can help cancer sufferers and survivors get second opinion grants which can literally save their life."

To support one of the paddlers named in this post, click on her name. You also can go here.

After the racing season ends, the paddlers have one more way to help sarcoma patients. They are planning the Power of the Ocean – Ocean of Hope Gala for Jan. 21. It will raise money specifically for Hand in Hand: the Suzanne R. Leider Memorial Assistance Fund, which offers financial assistance for second opinions by reimbursing expenses related to travel, phone bills, costs of the evaluation, and related expenses.

-- Suzie Siegel

Tuesday, August 23, 2011

Finishing what you start

This black-and-white photo was taken in 2000, when Mike Rogers was 50. He had just completed the last of six annual Catalina Classic Paddleboard Marathons, and had raised almost a million dollars for cancer patients.

He took time off to care for his ailing father, and he gradually got out of shape. Two and a half years ago, he began training again.

"I'm back to my fighting weight."

Four months ago, however, he tore his right bicep, paddling around the R10 buoy near Palos Verdes in Los Angeles County. He adds: "I have really bad tendonitis in both arms. I ice them every night. It's an overuse injury."

In the photo on the right, he makes his way under the Manhattan Beach Pier and, in the photo below, he comes in aching.

Luckily, he has a loving back-up team: his Australian shepherds, Makena and the red Angel, below.

Sunday, he will return to the Classic for the Ocean of Hope, a series of ocean races that benefit the Sarcoma Alliance. At 62, he will be the oldest O2H team member.

"Even if I blow out my bicep and have to have surgery Monday, I have to complete this. I'm an old linebacker at heart," he says. "I have a real fear of failure this year. People say, 'What's the worst that can happen? You have to give up?' To me, that is the worst that can happen. I do not want to fail.

"I've been surfing my whole life," says Rogers, who was a linebacker in high school and college. He started paddleboarding in 1993. "In my 40s and 50s, I was a really strong paddler.

"One of the problems of the Catalina Classic is that it's so long and so hard. The quicker it gets done, the easier. The last 10 miles are pure hell." If you don't paddle hard enough, the current can pull the board backward. "I have dreams of paddling backward."

Supporting the Sarcoma Alliance, Rogers has discovered this rare cancer is not all that rare, at least not to O2H members, some of whom have lost friends and relatives. "Every story reinforces our cause; that it is greatly needed … and that we are truly making a difference.

"I love being in motion, and I love helping people," he says, explaining his motivation. Just as I post this, I get an email from him, with these words: "Five days to go for the old horse ... Manhattan never looks so good. It's about life, long or short … the wake we leave is all it boils down to. So, I paddle and try to help the ones less fortunate, one paddle at a time ... I hope my wake is remembered as a good one ... in the end …."

To keep him going, donate here.
-- Suzie Siegel

Saturday, August 20, 2011

Living life fully, month to month

For a smart young athlete, the world may stretch out like a sea of possibilities.

"I went to college, worked a lot in my career, and went to grad school," Steve Shikiya says. Then cancer struck. He was treated for non-Hodgkin's lymphoma 2007-08.

"After treatment, your perspective changes so much. Life is short, and I'm more goal-oriented now. I live my life month to month."

This year he competed in the Cold Hands Paddle and the Rock 2 Rock Paddleboard and Stand Up Paddle Race, both at Cabrillo Beach in Los Angeles County. On Aug. 28, he will race in the Catalina Classic Paddleboard Marathon, ending at Manhattan Beach. He had never done these three before. Aimee Spector, co-captain of the Ocean of Hope campaign, asked why he wanted to take on the "holy trinity" of paddleboarding.

"Because I can do them right now," he responded. "I don't know about next year."

The long-distance races also attracted him, he says, because they feel "like something most people will never do."

The series of ocean races raises money and awareness for the Sarcoma Alliance. Shikiya raises funds to fight lymphoma, but he also decided to join O2H after talking to Phil Ambrose and other team members. He was impressed that the Alliance was so involved with the paddling community.

"I'm passionate about fighting all kinds of cancer," Shikiya says.

He's new to O2H, but not the ocean."I've surfed probably since I was about 4 years old, and I thought the worst part of surfing was the paddling.

"I've known Joe Bark since I was 5 or 6 years old." Two years ago, the well-known boardmaker offered to lend him a paddleboard, saying, "If you try it, you'll like it." About a month later, he talked to Charlie Hutchens of Joe Bark Paddleboards. "He's such a cool guy, and he spent so much time with me that I thought I had to try it." He did, and "from that moment, I was hooked."

"You can't surf all the time. But paddleboarding is different. You can pretty much do it any day. You can go anywhere you want," even places you can't go by boat. Plus, he adds: "I needed an excuse to do more exercising."

Shikiya has a fundraising page here.
-- Suzie Siegel

Catalina Classic coming Aug. 28

The Ocean of Hope helps keep the Sarcoma Alliance afloat.

"It has been an amazing road from when O2H started in 1999 with only one paddler … and a vision," says Mike Rogers, who will compete for O2H on Aug. 28 in the Catalina Classic Paddleboard Marathon, finishing on Manhattan Beach in Los Angeles County.

O2H members hope to raise $50,000 this year, bringing the 12-year total to $600,000. Just as important is awareness. The National Cancer Institute recognizes that sarcoma is “frequently misdiagnosed and highly underreported.” Patients -- and their health-care providers -- may not know all the treatment options or that nonprofits can help.

For the Catalina Classic, Rogers will join teammates Steve Shikiya, Joel Pepper, Philip Ambrose, Mark Schulein and O2H co-captain Fred Sardisco. Afterward, the team will raffle off a standup paddleboard donated by Joe Bark, with all proceeds going to the Sarcoma Alliance.

To contribute, go to this page.
-- Suzie Siegel

Tuesday, August 16, 2011

Scott Gamble does his best for us

Scott Gamble flew the flag of the Ocean of Hope last month, when he won second place in the men's standup division of the Molokai 2 Oahu Paddle-board World Champion-ships.

"The wind, tide and swell were very good," Gamble says. "There were a lot of records broken! I beat my personal best by 30 minutes."

This is his second year to support O2H, a series of ocean races that raise money and awareness for the Sarcoma Alliance. He paddles in memory of his 22-year-old cousin, Dodge Ackerman, who had angiosarcoma and rhabdomyosarcoma. To support Gamble, check out his fundraising page.

Other athletes and volunteers assisted him and raised awareness about sarcoma. "I am lucky to have such a great cause and organization supporting me," he says.
-- Suzie Siegel

Wednesday, July 27, 2011

Educating patients on sarcoma

Thursday, the Moffitt Cancer Center in Tampa will hold an educational event for sarcoma patients. A number of doctors do this across the country; let's encourage others to follow suit. It's a great way to recognize Sarcoma Awareness Month.

Some events offer support and a good time for patients who want to meet others with the same rare cancer. Others feature sophisticated, up-to-the-minute information, such as the "Ask the Experts: Advances in Sarcoma Treatment and Research" conference May 1 in New York City, presented by the Sarcoma Foundation of America, our sister organization.

As I did in New York, I'll staff a Sarcoma Alliance table at Moffitt's "What Is a Sarcoma? A Team Approach to Care." Other tables will have information on nutrition, physical therapy and social work. Exhibits will open at 4:30 p.m., with presentations by physicians starting at 5.
-- Suzie Siegel

Thursday, July 7, 2011

Sarcoma Alliance and 23 and Me

Recently the Sarcoma Alliance participated in a Sarcoma Community Night organized by 23 and Me. 23 and Me is trying to recruit 1,000 people affected by sarcoma in a genetic research study. Individuals only need to provide a little spit for genetic analysis. The hope that some genetic similarity can be found that will give researchers better insight into the diagnosis and treatment for all sarcomas. So far over 500 people are participating.

Participants on the panel in the community night were Kristen Ganjoo, MD a Stanford oncologist, Eric Nakakura, MD, a UCSF oncology surgeon, Natalie Criou a sarcoma survivor and founder of Beat Sarcoma ( ) and Arthur Beckert, Executive Director of the Sarcoma Alliance. As always the best part of the evening was hearing patient stories and the discussions among patients and the panel.

To see 23 and Me’s blog on this evening visit:

For More information on 23 and Me and its sarcoma project visit:

Friday, July 1, 2011

Ziopharm Oncology Awards Grant to the Sarcoma Alliance

ZIOPHARM Oncology awarded a $5,000 grant in support of the Sarcoma Alliance's Assistance Fund program. The grant will help support program costs and the development of a brochure describing the program. Ziopharm is a biopharmaceutical company engaged in the development and commercialization of a diverse portfolio of cancer therapeutics. The Company is currently focused on several clinical programs. One program for sarcoma is currently in a Phase III trial.

Palifosfamide (Zymafos(tm) or ZIO-201) is a novel DNA cross-linker in class with bendamustine, ifosfamide, and cyclophosphamide. ZIOPHARM is currently enrolling patients in a randomized, double-blinded, placebo-controlled Phase III trial with palifosfamide administered intravenously for the treatment of metastatic soft tissue sarcoma in the front-line setting. The company is also currently conducting a Phase I intravenous study of palifosfamide in combination with standard of care addressing small cell lung cancer and an oral form of the drug for treatment of solid tumors is currently in the advanced preclinical stage of development.

ZIOPHARM's operations are located in Boston, MA and Germantown, MD with an executive office in New York City. Further information about ZIOPHARM may be found at

On behalf of everyone we serve, a big thank you to Ziopharm.

Wednesday, June 15, 2011

NCI reports on advances in treatment for GIST and Alveolar Soft Part Sarcoma

The current issue of the National Cancer Institute's Bulletin (June 14, 2011) reports on advances in treatment for GIST and alveolar soft part sarcoma (ASPS). GIST survival improves with longer treatment with imatinib. For ASPS patients a phase II clinical trial of the experimental drug cediranib, more than half of patients saw their tumors shrink. For the full story visit:

Monday, June 13, 2011

Attention: Sarcoma Patients Needed for Study

The Sarcoma Alliance is providing this information as a service to the sarcoma community. Each person should make his or her own decision about participation.

Synovate Healthcare, a leader in global market research, is conducting a study on soft tissue sarcoma (STS). We would like to invite individuals diagnosed with STS to contact us for possible participation in this study.

Study Purpose: This research is being undertaken to shed more light on the journey of individuals with this condition and understand some of the challenges tied to the availability of support for both patients and caregivers. Your input will enable our client to provide helpful tools to assist new sarcoma patients as they go through the process of diagnosis and treatment. No attempts will be made to sell anything to you. This is for educational purposes only so that others may have an improved experience upon diagnosis.

Recruitment: All interested persons who are diagnosed with STS are invited to call Jody at Schlesinger Associates, 1-866-861-0395 x229. She will help to determine the feasibility of your participation

Participation: Study participation involves completion of a brief written description of your journey from diagnosis to present by using stories, pictures, or other means. After completion of this exercise, you will be asked to participate in a 75-minute phone discussion in which you will be encouraged to share your story. All aspects of the study are completed in the comfort of your own home with all expenses paid. Your confidentiality will be maintained at all times. Only your first name will be used during the phone discussion.

Incentive: Synovate is offering a generous token of appreciation in exchange for your participation on this study. This will be paid out after full participation on the study has been completed

Wednesday, June 8, 2011

June 28, 2011, Sarcoma Community Event, Mountain View, CA

Sarcoma patients, survivors and caregivers are invited to join 23andMe for a night of sarcoma education at our Sarcoma Community Event! This event will take place on Tuesday, June 28 from 6:15 - 9:00 PM at 23andMe Headquarters in Mountain View, California. Mix and mingle with fellow sarcoma patients while learning about patient and caregiver support opportunities and 23andMe’s Sarcoma Research Initiative. Engage in informational talks by top sarcoma physicians from Stanford and UCSF as well as patient advocacy leaders. Drinks and hors d'oeuvres will be served.

Event Speakers
Dr. Kristen Ganjoo, Stanford Medical Oncologist
Dr. Eric K. Nakakura, UCSF Cancer Surgeon
Nathalie Criou, Survivor and Beat Sarcoma Founder
Arthur Beckert, Sarcoma Alliance Executive Director

Registration and Reception at 6:15 PM; official agenda will begin at 7 PM.
The event will take place at 23andMe Headquarters: 1390 Shorebird Way, Mountain View, CA 94043.
Registration is complementary. Please RSVP to Space may be limited

Thursday, May 26, 2011

Miss Brooklyn is at It Again

Christina Moore, the reigning Miss Brooklyn and contestant for the upcoming Miss New York pageant, organized an amazing dance program and fundraiser benefiting the Sarcoma Alliance and the Miss Brooklyn Scholarship Organization on May 7. The event was a rousing success, featuring performances by more than 30 dancers and dance organizations and packing the auditorium.

Combining her love of dance with her desire to raise sarcoma awareness, Christina developed Performers with a Purpose: Bringing Sarcoma Awareness Center Stage, a unique program she implemented in three Brooklyn public schools. Christina taught dance clinics and spread the joy of the arts to as many students as possible, culminating in the May 7 fundraiser, which featured her prized pupils as well as amateur and professional dancers, including dancers from the Alvin Ailey Dance Studio.

Earlier, Christina organized the “Cupid’s Cure” Valentine’s Day benefit dinner, honoring her aunt, the equally energetic Josephine Schiavo, diagnosed with sarcoma in 2007 and going strong as the guest of honor. Coming up on June 4, Christina will host another fundraiser at Adventurer’s Park Family Entertainment Center in Brooklyn. For more details, visit the Sarcoma Alliance events page.

Wednesday, May 18, 2011

Sarcoma Drug Clinical Trial Seeking Patients

Ziopharm Oncology, Inc. has begun a Phase III clinical trial on Palifosfamide, a promising drug for the treatment of metastatic soft tissue sarcoma. This is a multicenter, international randomized, double-blinded, placebo controlled study of doxorubicin plus palifosfamide compared to doxorubicin plus placebo. Patients must be over 18 years old, have documented sarcoma and have not received prior treatment. Certain subtypes of sarcoma are also not eligible, e.g. alveolar soft-part sarcoma, chondrosarcoma, dermatofibrosarcoma, Ewing sarcoma, GIST, Kaposi sarcoma, mixed mesodermal tumor / carcinosarcoma and osteosarcoma.

Patients will receive either palifosfamide or a placebo on days 1, 2, and 3 of each cycle of doxorubicin. A maximum of six cycles can be administered.

The trial will be conducted in over 400 centers throughout the world to about 420 patients. Ziopharm hopes to have all patients enrolled by the end of 2011.

For more information on the trial, eligibility requirements and locations please visit: .

Wednesday, May 11, 2011

Attention New York City readers

On June 4, come to the Adventurer's Family Entertainment Center at 1824 Shore Parkway, Brooklyn, N.Y. for an exciting and fun day for the whole family. Meet Christina Moore, Miss Brooklyn 2011, at an event honoring her aunt and sarcoma survivor, Josephine Schiavo, and benefiting the Sarcoma Alliance and the Sarcoma Foundation of America. The day will feature dance performances by "Performers with a Purpose," face painting, temporary tattoos and much more. For information on the park, go to its website or call 718-975-2748.

Wednesday, April 20, 2011

Educational conference in NYC

By Suzie Siegel, board member

The Sarcoma Foundation of America, our sister organization, will present its annual Patient Educational Conference May 1 in New York City.

Patients, families, caregivers and medical professionals will attend the conference 11 a.m to 3:30 p.m. at the Grand Hyatt Hotel, 109 E. 42nd St. Admission is $35, including a buffet lunch and a workbook based on the doctors' talks.

SFA is celebrating its 10th anniversary this year. The Sarcoma Alliance is its "older" sister -- this is our 12th year. Our founders knew each other, and we have always worked together on issues. SFA focuses on raising money for research while the Alliance concentrates on patient education, guidance and support. But there is overlap, of course, with the NYC conference being just one example.

The SFA has kindly allowed me to have a table at the conference this year. Please feel free to stop by, talk about what's new and see if the Alliance can help you in some way.

The expertise of the physicians on the panel is very impressive, and they will answer questions after their talks. Here is the lineup:

Raphael E. Pollock, MD, PhD, FACS
Professor of Surgery, Department of Surgery, M.D. Anderson Cancer Center in Houston
Topic: Advances in Sarcoma Surgery

Dina Chelouche Lev, MD
Assistant Professor, M.D. Anderson
Topic: Advances in Malignant Peripheral Nerve Sheath Tumors

George D. Demetri, MD
Director, Ludwig Center at the Dana-Farber/Harvard Cancer Center and Sarcoma Center in Boston
Topic: Future Directions of Sarcoma Therapy

John S.J. Brooks, MD, FRCPath
Director, Pathology and Laboratory Medicine, Pennsylvania Hospital in Philadelphia
Topic: Advances in Sarcoma Pathology

Robert G. Maki, MD, PhD
Professor, Department of Pediatrics & Medicine, Mount Sinai School of Medicine in New York City
Topic: Emerging Therapies for Sarcoma Patients

John M. Goldberg, MD
Assistant Professor of Clinical Pediatrics, University of Miami Miller School of Medicine
Topic: Advances in Sarcoma Vaccines and Immunotherapy

Tuesday, April 5, 2011

Jewelry Designer Raises Money for the Sarcoma Alliance

Coleen Workman is a talented and successful jewelry designer in Salt Lake City, Utah. She has a relative who was recently diagnosed with sarcoma for the second time. She went through all the treatments two years and ago and it has come back. This time, with a vengeance. She has started treatment again and it’s tough. She is only 49 and has two beautiful grand babies. Additionally, her father was diagnosed with pancreatic cancer in December 2009. Her family’s story is much like other people when they get the news. Coleen and her three sisters and spent their time finding out everything they could about these awful diseases.

During this time Coleen started making jewelry for family and friends to keep hope and her father in their thoughts and prayers. She wanted to do more and contacted the Pancreatic Cancer Action Network and was able to display her jewelry on their website. She loves helping them raise money for research and also helping other families to have hope. Her father passed away in August 2010.

Coleen contacted the Sarcoma Alliance an offered to sell some of her beautifully designed jewelry on our website, helping us support those affected by sarcoma. All of her designs are made with the highest quality sterling silver and semi-precious stones. For the Sarcoma Alliance her jewelry is made with a yellow stone called citrine. The jewelry is finished without pits and discoloring. Each piece is shipped in a yellow organza bag with an information card on how to care for it and Never Lost Hope statement. If you would like to see her work and order a piece visit our store at:

Tuesday, March 1, 2011

Made Me Nuclear is Back

Singer/songwriter/producer and cancer survivor, Charlie Lustman, has completed the first pop record about a cancer experience. Charlie's battle with osteosarcoma in his jaw bone didn't stop him from creating his inspiring collection of uplifting and emotional pop songs. The album entitled, MADE ME NUCLEAR, is available at MadeMeNuclear.Com. He has performed his songs at accross the United States raising awareness about sarcoma and the Sarcoma Alliance. Additional information at:

April 28, 2011 Oncology Nursing Society, Boston, MA

June 5, 2011, National Cancer Survivor Day, University of Michigan

Wednesday, February 16, 2011

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.

Wednesday, February 9, 2011

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.

Tuesday, February 8, 2011

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 .

Friday, February 4, 2011

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

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.

Tuesday, February 1, 2011

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.

Friday, January 28, 2011

Talk on sarcoma Feb. 11 in LA

Andrew Hendifar, MD, will discuss the latest in the diagnosis of and treatments for soft-tissue and bone sarcoma Feb. 11 at the Cancer Support Community, Benjamin Center, 1990 S. Bundy Drive, Suite 100, Los Angeles 90025. The lunchtime talk is free, but call 310-314-2555 for reservations.

Thursday, January 27, 2011

Our executive director reflects on our changes

As the Sarcoma Alliance enters its 12th year, I'm reflecting on my exciting and rewarding six years as executive director. When I started, the Alliance was essentially run by a volunteer Board of Directors made up of family and friends of the founders, Suzanne Leider and Wendy Sommers. The organization had, at times both painfully and happily, grown beyond what an all-volunteer “staff” could handle. I was hired to take much of the day-to-day operations off the shoulders of the board and to grow it to better serve those affected by sarcoma. The transition from an all-volunteer organization to one with paid staff has been an adventure for everyone involved.

The board was, and continues to be, incredibly diverse in their skills and all extremely committed and passionate about the organization. At first, I was watched like a hawk. It was difficult for board members to let go of something that had been such an all-consuming part of their lives. As time went on and the Alliance continued to be effective and successful, my daily phone calls and contact became less frequent.

We now have a part-time office manager, Pam Cresta, and we pay a couple of others, as needed, for computer help and other specialized skills. Although the staff does a lot, the Alliance still depends on the skills and time of board members and other volunteers. It is always interesting working at the pleasure of the board while, at times, having to remind them of projects that can be done only with their help. Who works for whom is a question we are constantly trying to answer.

We are proud of the many accomplishments during the past six years. We are now on Facebook and have an active and vibrant blog. We have made major changes to both the content and look of our website. Our Peer-to-Peer Program, begun almost four years ago, has grown to include people from all 50 states and 21 countries. We have partnered with a number of organizations so our voice is better heard in Washington as the debate continues about health-care coverage and funding for research of rare diseases such as sarcoma.

The last two years have been especially challenging for the Sarcoma Alliance, as they have for most individuals and organizations, small and large, in the U.S. We have tried to find ways to cut costs without impacting any of our core programs and services. We have cut back on travel to conferences that we use to educate providers about what we do and how we can help them help their patients. The mailed, paper newsletter was the single greatest cost. We are beginning to use an electronic emailed newsletter and report on all of our activities and services on our blog. I hope you visit this blog and our website on a regular basis to see the changes. Finally, please take a moment to remember all those who work so hard to help, and do what you can to support us. We will continue our unwavering focus to provide guidance, education and support to everyone affected by sarcoma. Thank you.

-- Arthur Beckert, Executive Director