Thursday, October 20, 2011

Must-Read Articles

Here are some "must read" articles for newly diagnosed sarcoma patients

1. A Guide to the Sarcoma Universe for Those who Have Just Arrived (and the friends & family that support those with cancer)

2. The Importance of Second Opinions for Sarcoma

3. The Importance of Treatment at a Specialty Center for Sarcomas

4. Psychological Adaptation, Coping, and Distress in Adult-Onset Soft Tissue Sarcomas Although this article deals with adult patients with soft tissue sarcomas, I believe it is extremely helpful for medical teams, patients and caregivers dealing with all types of sarcoma and ages.

5. Newly Diagnosed with Sarcoma: A Guide To The Sarcoma Universe

6. Guidelines for newly diagnosed sarcoma patients and their families.

Thursday, August 25, 2011

Sarcoma Cup 2011 AUCTION

The 2011 Sarcoma Cup is THIS WEEKEND, and we could not be more excited for all the fun in store for everyone who is able to come out in support of a great cause.

In addition to the delicious dinner, scrumptious breakfast, and sailing action, you can also lend your support to sarcoma research by participating in our 2011 Charity Auction. Support the cause and also take home one of many incredible prizes, including Hawaii resort stays, private plane rides, a tour of the Facebook campus, cruises, sailing gear, and more! Check out all the items up for auction this year at this link.

If you're not able to join us in person for the Sarcoma Cup fun, you can call (415) 200-7309 to broker your bid for the charity auction.

We're looking forward to seeing many sailors and non-sailors this weekend for great food and sailing fun. For more information or to buy tickets for Saturday dinner or Sunday breakfast, visit

Wednesday, August 10, 2011

Announcing the 2011 Sarcoma Cup: Aug. 27-28

The Sarcoma Cup ( is a charity fund-raiser and celebration of the sailing life that features great racing, excellent dockside activities, and support for a very worthy cause. All proceeds beyond costs will go towards research for a cure for Sarcoma, the 'forgotten cancer' - and we will strive to cover all costs through some form of sponsorship. The Sarcoma Cup trophy itself was custom-made for the event and donated by Jerry Kermode, a world-class woodworking master.

All one-design classes and PHRF racers are invited to this event. Multihulls are welcome on Sunday. The regatta will be governed by the Racing Rules of Sailing (2009-2012). Good Karma, prizes and trophies given for charity donations and exceptional sailing!

The event organizer is the IRS-recognized 501(3)c nonprofit BeatSarcoma and your host is the Berkeley Yacht Club. Many other local orgs are pitching in to help run the event, including the Berkeley Marina, Richmond Yacht Club, and South Beach Yacht Club. See our creditspage for a more complete list.

We believe that it's possible to further a charitable cause in a highly efficient manner while still providing a great experience to participants and volunteers. The details of BeatSarcoma financial policies are spelled out on their website, but the short version for the Sarcoma Cup is: All net proceeds of this event go straight to the cause. There are no deductions for BeatSarcoma, Inc. expenses such as salaries, stipends, etc. Event expenses do not include compensation of BeatSarcoma insiders for their time or efforts. Event and organization staff are volunteers.

For more information and to register, visit Then join us on August 27-28 for two days of great racing and fabulous dockside activities! All net proceeds of this event go straight to the cause.

-Winner of the cup will win a free on the water rig tuning offered by Easom rigging

-Awards include gift certificates, sailing items, and various other prizes in addition to the trophies

-In particular, the J105s will receive
1st prize: $200 Musto gift certificate, redeemable at Pineapple Sails + Musto flag (see below)
2nd prize: $150 Musto gift certificate, redeemable at Pineapple Sails
3rd prize: $50 Musto gift certificate, redeemable at Pineapple Sails

-Skipper's Packets include:
ocean navigator magazine
sailing world magazine
discount vouchers at KKMI
free massage coupons for skipper and crew

-Events offer great FREE perks:
free bar: beer and rum punch on Saturday and free wine on Sunday
free massage for all participants!!!!
free coffee and pastries
free live bands:
Blazing Saddles for saturday afternoon
Ukulele Ladies for saturday dinner
Stephanie Teel for saturday party, rocking the house!
Jazz band for Sunday award/dinner

-Great deals on:
wicking event shirts
gourmet dinner on Saturday night
hearty breakfast on Sunday morning

-Charity auction include:
cruises and tropical getaways
personal flights
sailing gear
art work
pair of Ultima Boots donated by Dubarry Ireland

Saturday, May 14, 2011

23andMe Sarcoma Community Letter

Genetic research is a numbers game. The more people who contribute to the effort, the more powerful it gets. As our Sarcoma Community grows with more survey responses and genetic data from you and other participants, we learn more about sarcoma and people's responses to treatment.

We are over halfway to our goal of 1,000 active participants and we continue our quest for new discoveries to share. More than 52 percent of our current community members have joined through advocacy groups that have partnered with 23andMe, such as ACOR, Sarcoma UK, Sarcoma Alliance, and Beat Sarcoma. Others have learned about the Sarcoma Research Initiative through Yahoo groups, sarcoma blogs, social networking sites, friends, and visits to the 23andMe website. In the last two months, over 100 new Sarcoma Community members have claimed their kits and been genotyped. More than 350 members have already taken the sarcoma survey -- we have received over 80 new responses since our last update in early March. Thank you all for the support and contribution to this study.

Our community growth is exciting, but we still have a long way to go to reach 1,000 members. What is the critical number needed to reach a breakthrough? 600 participants? 800? 1,000? Our 23andMe scientists continuously look at the data, searching for a better understanding of the genetic components of sarcoma and its treatment. While we continue on our quest for discoveries, we ask for your help to spread the word to sarcoma patients worldwide. The link to share is:

Our goal is to feature at least one sarcoma event or patient story in each newsletter. Thank you to National Leiomyosarcoma Foundation (NLMSF) President Joni Fixel for sharing news from her organization's annual meeting with the 23andMe Sarcoma Community.   

Last month, the National Leiomyosarcoma Foundation (NLMSF) hosted its annual membership meeting in Branson, MO from April 7-9, 2011. It was a wonderful weekend of sharing, caring and learning about advances in the research funded by the NLMSF. On Thursday evening attendees met for a night to meet and share with each other. This was an opportunity to renew old friendships and make new ones. On Friday we heard from one of the researchers and a nutritionist who works with cancer patients. In the afternoon, attendees were offered an opportunity to tour the College of the Ozarks (also known as Hard Work U) where college students work instead of paying tuition. On Saturday morning the Annual Membership meeting took place.  Additional presentations were given by the doctors where the foundation funds the research. Members were able to ask questions directly of the research doctors and able to understand this rare cancer.  An update was given on the accomplishments of the NLMSF in the past year and the goals for the upcoming year. New Board members were announced and introduced to the membership. Throughout the weekend, information about 23andMe was given out and available for all attendees. For more information go to  

- Joni M. Fixel, President NLMSF 

If you have an event or story to share for an upcoming newsletter, we would love to hear it! Also, we value your feedback about your experiences with the Sarcoma Community and welcome your suggestions as to what you would like to see from us. Please email information or questions to Thank you!

Until next time...
The 23andMe Research Team

Sunday, February 27, 2011

23andMe announces the appointment of a Sarcoma Medical Advisory Committee

This week 23andMe also announced the creation of an Independent Sarcoma Scientific Advisory Committee with the appointment of leading researchers and clinicians detailed below. To learn more, please visit 23andMe's Blog

23andMe Sarcoma Community Reaches 500 - BeatSarcoma Founder shares her interest in the program

There is strength in numbers. 23andMe is well on its way to achieving the 1,000 person Sarcoma Community milestone. 
We have over 500 individuals who have joined our sarcoma group from all over the world and with ties to several different patient organizations. The potential of this community to make a difference in the understanding of sarcoma and the development of the effective therapies is enormous. The value in research comes from you, from individuals with sarcoma sharing with us your genetic information and survey responses. 

We need your help in spreading the word about our 23andMe Sarcoma Community. If you are part of any sarcoma online forums, advocacy groups, or social networking sites, please let your community know about our research efforts at 23andMe. The link to share Thank you!

Nathalie Criou, sarcoma survivor and founder of BeatSarcoma, has been instrumental in the 23andMe Sarcoma Community outreach effort. Please read on to learn more about Nathalie's story:

I was diagnosed with sarcoma in late 2006, and spent most of 2007 in treatment for the disease. After my diagnosis, I was struck by how little was known about sarcoma and how difficult it was to find people in my situation. The local oncologists referred me to sarcoma center specialists - however these world specialists had very little understanding of the disease themselves and even an accurate diagnosis was hard to find!

I received 8 different sarcoma diagnoses and 7 different treatment recommendations. I spent hours researching published papers on sarcoma to help me decide on a treatment path. I realized that most studies were not significant because the number of enrolled patients averaged about 3...There was no way to gauge how *I* would respond to any particular approach. My physicians referred to my treatments as 'experimental', 'unproven'. I felt like anything would be a big shot in the dark...and I probably had only one shot...

Research in this field is trailing that of other cancers, yet sarcoma represents 20% of all childhood cancers, pointing at some genetic causes that could never be established through a lack of scalable research programs. This situation was unacceptable to me and I created a nonprofit, BeatSarcoma, as a vehicle for change. When 23andMe approached me with their idea of building a sarcoma community and free large-scale research program, I was thrilled. It addressed exactly the two most critical needs of the sarcoma community with a format that is perfect for our scattered group. Sarcoma research must be innovative, as traditional research formats have not yielded results so far. 23andMe embodies this spirit of innovation.

23andMe is eager to work with sarcoma specialists to drive toward the best possible results and has actively pursued partnerships with the world-leading experts. I immediately signed up to help in my own little ways and I will continue to do anything I can to support this effort. I really want this program to succeed so we can further our understanding of sarcoma. I trust that the model can be replicated over other cases of rare diseases.

Please help us spread the word through your local sarcoma organization, physicians and fellow patients or survivors. The success of this program rests on our shoulders!

Nathalie Criou
Founder BeatSarcoma

Help us with the fight against sarcoma. Join the 23andMe Sarcoma Community.

Friday, February 18, 2011

Research Update - sarcoma

For Release Monday February 14, 2011 Noon EST
For information contact:               Charles Keller MD (503-494-1210,, or

                                                                Tamara Hargens-Bradley,
Senior Communications Specialist
Oregon Health & Science University/Doernbecher Children's Hospital
 (Office): 503-494-8231   (Fax): 503-494-8246

In a report published today as the Featured Article in the journal Cancer Cell, investigators at the Oregon Health & Science University (OHSU) reveal interesting new findings for a kind of cancer called sarcoma.  The most common sarcoma of children occurs in the muscle and has an appearance of muscle.  In adults, sarcomas are often even more primitive appear.  In their report, the Keller Laboratory reveals that childhood and adult sarcomas are linked in their biology, mutations and the cells from which these tumors first start.

Childhood muscle cancer, or rhabdomyosarcoma, is a condition that when spread throughout the body leads to a low survival rate – only 20 – 40%.  In adults with soft tissue sarcomas, survival can be even lower.  Now, for the first time, scientists and doctors know from where these tumors arise and what drives them to grow and spread.  Armed with this new information, the researchers in the Pediatric Cancer Biology Program at OHSU are looking for ways to stop or eradicate these sarcomas.

“A commonly held belief is that cancers should be cut out, burned out or killed.  There is a fourth option – to have cancer cells choose to become normal cells, in this case muscle cells,” says Dr. Keller, who led the study.  “A least for a subset of patients, possibly the ones with hereditary cancer, one approach suggested by our research might be to administer drugs that muscle cancers to convert into non-cancerous muscle fibers.  This is a minority opinion, but one held by a small group of careful scientists throughout the US and abroad.”

The survival rate for childhood muscle cancer that has spread has remained unchanged for more than 40 years.  It has reached the point that increasing the intensity of chemotherapy, radiation or surgery is no longer having any improved effect.  A novel approach taken by Keller and his colleagues in the laboratory as well as in new clinical trials is to use non-chemotherapy medicines to inhibit “molecular targets” such as growth factor receptors in this disease.  Suman Malempati, Director of the Oncology Developmental Therapeutics Program at OHSU’s Doernbecher Children’s Hospital, is the lead on a national clinical trial of one such growth factor inhibitor.  This study is the first trial to incorporate a molecularly-targeted drug into a clinical trial for childhood muscle cancer for the Children’s Oncology Group/Curesearch, a nationwide network of hospitals, doctors and leading scientists that develop new treatments for childhood cancer.  This type of therapy tailored to a cancer’s mutation was first pioneered at OHSU by DeBakey-Lasker Award Recipient, Dr. Brian J. Druker.  Dr. Druker and his colleagues developed a non-chemotherapy pill, Gleevec, which when taken each day causes a form of blood cancer, chronic myelogenous leukemia, to remain dormant indefinitely.  Personalized Cancer Care for children and adults is the primary mission of the Knight Cancer Institute at OHSU. 

Charles Keller, M.D.        Associate Professor       Leader, Pediatric Cancer Biology Program
Pape' Family Pediatric Research Institute, Department of Pediatrics, Oregon Health & Science University
Tel 503.494.1210    Fax 503.418.5044

our lab blog:     

our Pediatric Cancer Biology Program:               

our high risk/high reward therapeutics initiative: