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 www.l-sarcomastudy.com or www.clinicaltrials.gov (Identifier # NCT01343277).

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.

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:

https://www.23andme.com/about/press/23andme_achieves_milestone_in_building_sarcoma_research_community/

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.

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.

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.

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.

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.”

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

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

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

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

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

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 (http://www.beatsarcoma.org/ ) 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: http://spittoon.23andme.com/2011/07/06/a-recipe-for-disease-research-give-people-tools-add-passion-and-shake/

For More information on 23 and Me and its sarcoma project visit: https://www.23andme.com/sarcoma/