Monday, August 29, 2016

Applying for Disability for Sarcoma

If you or a loved one has been diagnosed with sarcoma, you may be worried about your ability to work at your current job while receiving treatment. Fortunately, there could be financial resources available for you from the Social Security Administration (SSA).

Sarcoma that is advanced or recurrent automatically meets the SSA’s medical eligibility requirements. With newly diagnosed or early stage sarcoma that responds to treatment however, getting disability can be more difficult, though it is still possible.

Whether you automatically qualify or must fight a little harder to get approved, the disability application process is worth the time and effort. Disability payments are issued monthly and this consistent income can help you and your family get by without your regular paycheck.

The SSA’s Disability Programs

Disability benefits are available to individuals of any age that have a qualifying medical condition and meet the program-specific, technical eligibility requirements. Disabled workers receive benefits through Social Security Disability Insurance (SSDI), while applicants with limited income and other financial resources may receive Supplemental Security Income (SSI) instead of SSDI.

SSI can be hard to qualify for, as it was designed for the most needy Americans. If you have a spouse
who works and earns a decent income, you will not qualify for SSI. On the plus side, if you’ve worked at least part-time throughout adulthood, you’ll almost certainly have earned enough taxable income to qualify for SSDI.

The Sarcoma Disability Listing

Every time the SSA receives an application for disability benefits, they will compare your condition to its own list of qualifying conditions, known as the Blue Book. The sarcoma disability listing requires your cancer has either spread or come back after initial treatment. If you have recurrent sarcoma, or sarcoma that has spread to another region of your body, you will automatically qualify for disability benefits. All you’ll need to apply are medical records and biopsy reports proving the advancement of your sarcoma.

Qualifying through an RFC

Although cancer and the treatments necessary to combat it are often disabling, the SSA’s disability
programs are designed specifically for people with long-term or permanent impairments and terminal
illnesses. Sarcoma that responds to treatment and will not require at least 12 months of chemotherapy,
radiation, or other anticancer therapies therefore does not usually meet eligibility rules, at least not
through the Blue Book.

Getting a disability approval outside of the Blue Book however means you must go through additional eligibility determination steps. This process, which is called a “residual functional capacity” or RFC analysis, requires the SSA looks closely at all your limitations. They will request you and your doctor complete functional reports. Others, like friends, family, or caregivers you list on application, may also be asked to complete functional report forms.

The SSA uses all of this additional information to understand your symptoms and treatment side effects as well as the limits they impose on you. If the RFC shows you’re unable to work due to your cancer and treatment side effects, then you may be approved, that is, as long as you’re likely to be out of work for the standard minimum 12-month timeframe.

Applying for Benefits

Online application is offered for SSDI. SSI applications however require a call to the SSA, at 1-800- 772-1213, or a trip to the local office. You can also apply for SSDI locally or over the phone, although filing online may be more practical and convenient.

Disability applications require the disclosure of significant details, including your employment history, education, job training, and financial situation in addition to your medical history. It’s always best to apply slowly and carefully, to ensure the SSA has all the information it needs to make a decision on your sarcoma claim.

Once approved, your family can worry less about income and focus on what’s truly important: recovery.

This article was provided by Disability Benefits Help. If you have any questions on whether or not your sarcoma qualifies for disability benefits, feel free to contact us at help@disability-benefits-

Friday, June 8, 2012

Beat Sarcoma donates $15,000 to Stanford

Beat Sarcoma recently donated $15,000 to Stanford University, which is funded to do a large study on leiomyosarcoma specimens from tumors that arise either in the uterus or in the soft tissues throughout the body. They will compare these leiomyosarcomas to other sarcomas that occur in the uterus, including endometrial stromal sarcoma and its recently discovered variants. Matt van de Rijn of Stanford said, "The money will be used at least to a great extent to cover the costs doing the analysis on twelve endometrial stromal sarcomas in this way. We believe that this will be a very valuable addition to our dataset and hope that we will identify not only novel diagnostic markers but also potential therapeutic targets."

Monday, March 26, 2012

BeatSarcoma makes a $15,000 research gift to UCSF

Beat Sarcoma recently donated $15,000 to help fund Dr. Nakakura's sarcoma research at University of California San Francisco. Dr. Nakakura is active in bench-to-bedside (translational) studies aimed at earlier detection of neuroendocrine tumors at at time when there is still the possibility of surgical resection. He is also investigating new and novel therapies for patients with advanced disease who have inoperable tumors.

“We are incredibly grateful for the ongoing partnership with BeatSarcoma. Your critical support of our translational research studies will help us to rapidly bring discoveries from the lab to our patients.”

Dr. Eric Nakakura is a cancer surgeon who specializes in tumors of the pancreas, bile ducts, liver, and gastrointestinal tract. He also treats soft tissue sarcomas, including tumors of the retroperitoneum, trunk and extremities. At the UCSF Helen Diller Family Comprehensive Cancer Center, he participates in the management of complex gastrointestinal tract cancers, soft tissue sarcomas and gastrointestinal neuroendocrine tumors, including carcinoid and islet cell tumors.

For more information on Dr. Nakakura's research, visit,-md,-phd.aspx.

Monday, February 27, 2012

Canadians: Online Discussion for Advanced Soft Tissue Sarcoma Patients

Attention Canadians! Consumer Vision, a national market research company located in Toronto, is seeking individuals who have been diagnosed with Advanced Soft Tissue Sarcoma to participate in a three day online discussion board.

To qualify, patients must have been diagnosed with Advanced Soft Tissue Sarcoma, and currently be undergoing treatment.

Patients will be able to participate in the three day online board from the comfort of their home and at their convenience.

They are offering a $175 honorarium to all those who qualify and participate.

(Canadian residents only, please.)

If you're interested, contact Melissa Vodopia toll-free at 1-866-967-1596 or via email at

Tuesday, January 24, 2012

Sarcoma Trial at National Cancer Institute

We wanted to pass on some information on behalf of Dr. Shivaani Kummar at the National Cancer Institute to inform you about a trial for which they are currently recruiting at the NIH - National Cancer Institute. The study is a randomized Phase II trial of Sunitnab vs. Cediranib Monotherapy to treat Alveolar Soft Part Sarcoma, with cross over at disease progression. A snapshot of basic information pertaining to the trial is below. If you have any questions or concerns, please contact:
NCI Referral Office: 1-888-NCI-1937 (
Lauren Powell, Clinical Research Coordinator: 301-451-0992 (

Sunitinib or Cediranib for Alveolar Soft Part Sarcoma

Sponsored by: National Cancer Institute (NCI)

Information provided by: National Institutes of Health Clinical Center (CC) Identifier: NCT01391962

Alveolar soft part sarcoma (ASPS) is a rare, highly vascular tumor accounting for less than 1% of soft tissue sarcomas. There is no effective systemic treatment for patients with metastatic ASPS. Little is known with regards to relevant molecular markers as potential therapeutic targets. Cediranib (AZD2171) and sunitinib (SU011248), oral small molecule inhibitors of VEGF receptor tyrosine kinases, are showing preliminary evidence of activity in patients with ASPS.

Part I: Determine the objective response rate (ORR) of single-agent cediranib and single-agent sunitinib malate in patients with advanced ASPS.
Part II: Determine the ORR of cediranib in patients who progress on the sunitinib arm, and determine the ORR of sunitinib in patients who progress on the cediranib arm.
Determine the progression-free survival (PFS) at 6 months in Part I and in Part II of the study for single-agent cediranib and single-agent sunitinib malate in patients with advanced ASPS.
Evaluate gene expression in tumor biopsies obtained at baseline and after treatment (at the Clinical Center, NCI only).

· Patients age greater than or equal to 16 years with histologically or cytologically confirmed metastatic ASPS.

· Patients must not have received treatment with any VEGF receptor tyrosine kinase inhibitor (e.g., cediranib, sunitinib, pazopanib, sorafenib); however, prior treatment with bevacizumab is allowed.

NCI Referral Office: 1-888-NCI-1937 (
Lauren Powell, Clinical Research Coordinator: 301-451-0992 (
United States, Maryland- National Institutes of Health Clinical Center, 9000 Rockville Pike, Bethesda, MD.

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:     

Monday, October 11, 2010

BeatSarcoma makes a $20,000 research gift to UCSF

BeatSarcoma is very pleased to announce that it just made a $20,000 research gift to UCSF sarcoma research program, thus adding another formal program to the list of sarcoma programs it supports.

UCSF recently created a sarcoma research group and has worked closely with BeatSarcoma to identify the most impactful projects to fund. BeatSarcoma's Medical Advisory Board reviews all proposals for funding and makes a recommendation to the BeatSarcoma Board of Directors.

From left to right: Nathan Bossett, Nathalie Criou from BeatSarcoma and Dr Eric Nakakura, MD, PhD, UCSF

The money will help fund UCSF translational research laboratory dedicated to understanding basic mechanisms of sarcoma cancer growth - rapid processing is a key element of tissue collection and critical to the quality of molecular research as any lengthy wait or mishandling could lead to cell degradation and wrong conclusions. The UCSF laboratory benefits from a direct line into the operating room and can fully control the way tissue samples are collected and stored or cultivated, thus ensuring cell biological integrity.

Dr Nakakura, MD, PhD in the UCSF translation laboratory

Dr Nakakura, MD PhD, the lead investigator and a cancer surgeon specializing in the treatment of soft tissue sarcoma says: "I'd like to offer my sincere thanks to BeatSarcoma for its tremendous generosity. Please know that our ongoing partnership has a direct impact on our sarcoma studies that we hope will benefit patients in the near future.  We greatly appreciate the support!"

Saturday, October 9, 2010

Dr. George Demetri MD and Dr. Robert Maki, MD, PhD join BeatSarcoma's Medical Advisory Board

BeatSarcoma feels very honored to count Dr. George Demetri, MD of Dana-Farber and Dr Robert Maki, MD, PhD of Memorial-Sloan Kettering on its Medical Advisory Board. Together with Dr Amreen Husain, MD of Stanford University, they will advise the BeatSarcoma Board on the best way to disburse research funds.

Dr George Demetri is Director of the Center for Sarcoma and Bone Oncology; Senior Vice President for Experimental Therapeutics; Director of the Ludwig Center at Dana-Farber/Harvard Cancer Center; executive director for Clinical and Translational Research at the Ludwig Institute for Cancer Research. and Associate Professor of Medicine, Harvard Medical School on its Medical Advisory Board.

Dr Robert Maki is a medical oncologist and co-leader of the adult Sarcoma Disease Management Team at Memorial Sloan-Kettering Cancer Center with a special interest in new therapies for the treatment of soft tissue and bone sarcomas, particularly metastatic disease. He is also trying to develop vaccines and other forms of immunological therapy against sarcomas to "teach" the immune system to attack tumor cells but not normal cells.

Please join us in welcoming both of them to our community!

Sunday, October 3, 2010

2010 Sarcoma Cup

The 2010 Sarcoma Cup, the 3rd annual sailing regatta organized by BeatSarcoma took place on August 28th and 29th at the Berkeley Yacht Club. Over 84 boats registered in what has become a long-awaited event in the Bay Area sailing community. Saturday’s was a buoy race, and Sunday’s was a long distance race 'Islands of Hope' - both on the San Francisco Bay.

This year, the sailing regatta grossed over $32,000 to benefit BeatSarcoma, the organizing nonprofit that raises funds for sarcoma cancer research, read more here. This successful event had changed its location from the previous two years at the Richmond Yacht Club. The winner of the Cup was the Wabbit Mr McGregor from the Richmond Yacht Club - the Sarcoma Cup trophy will therefore remain at the Richmond Yacht Club until the next event!

This year also featured a new website, check out, which some say it’s so alive it entices even those who normally do not sail to do so more often.

Here are some summaries:

Thanks to all of our corporate and private sponsors who made it possible for us to increase our fundraising through raffle, and online and silent auctions, as well as to our dedicated volunteers, who donated their time coordinating the event, manning registration and shirt tables, decorating, cooking, doing water taxi, among other fun duties!

Tuesday, July 6, 2010

Sarcoma International Awareness Week - July 17-20

For July Sarcoma Awareness Week - please wear a BeatSarcoma shirt or swag or simply put a sticker on an existing shirt. Take a picture with the caption 'Team Sarcoma Initiative' and email it to info at We want to help beat last year's records in terms of participants!!!

 We'll create an album that can be linked from the Team Sarcoma page

Find out more about what is happening in your neighborhood or elsewhere in the world during that week, check

Wednesday, April 28, 2010

BeatSarcoma Makes a $5,000 Research Gift to UCSF

BeatSarcoma extended its support of Sarcoma Research to UCSF - as it exceeded its fundraising goals in 2009 and had more funds available than what it had already committed. UCSF has long been treating patients with sarcoma and recently decided to form a sarcoma research group.

'We have been discussing sarcoma research since our inception with UCSF and we are extremely pleased to see this development and honored to lend our support to this world-class institution' says Criou, BeatSarcoma President. 'UCSF offers sarcoma research projects that are very much in line with BeatSarcoma's funding philosophy.'

Dr. Eric Nakakura of UCSF, Nathalie Criou and Nathan Bossett of BeatSarcoma

Dr. Nakakura is a cancer surgeon who treats patients with soft tissue sarcoma. He also runs a translational research laboratory dedicated to understanding basic mechanisms of cancer growth that might be exploited to better treat patients. With the help of funding from BeatSarcoma, Dr. Nakakura and his laboratory will investigate the role of a critical growth and signaling pathway in human sarcoma--the mTOR pathway. His group will determine the expression and activity of mTOR pathway components in a diverse collection of human soft tissue sarcoma samples. They would then investigate the efficacy of mTOR inhibition on sarcoma growth in vitro and in vivo.

Dr. Nakakura supported BeatSarcoma's 2010 Fun Run on April 25 noting 'it means a lot to me to hear first hand the motivation for sarcoma research.'

Tuesday, April 27, 2010

Submit an entry to the 'Everyday Sarcoma Hero' project

Submit an entry to the Everyday Sarcoma Heroes project? Everyone who has dealt with sarcoma knows a hero or two. Heroes support, encourage and inspire us in extraordinary ways. Just when we need them most, they are there. They challenge us, comfort us, and give us hope.
Everyday Heroes is an effort to honor sarcoma patients and those who have touched the lives of sarcoma patients, and to inspire kindness and supportive action for everyone dealing with sarcoma.

BeatSarcoma 2010 Fun Run

James - 2nd place - pet category

Thank you everyone for coming to our third annual Fun Run!
It looks like we have raised more money than in the first two years combined

We will triple-check next time we book the venue to avoid buses driving through the course...print a map of the park for our volunteer massage therapist to save him from being lost...put a volunteer with a sign translated into 18 languages at the turnaround point and double up with signs at the beach saying 'if you read this, you have gone too far'...

The great news is that people came to run and they did plenty of running, some even ran around for a little while. People came to walk and they walked. Any extra distance did not cost any extra money...Dog came, ate treats, wore cool t-shirts and won prizes. Kids ran with a smile on their face and the sun was out to greet team Millie, team Lauren, team Paul and team Dave.

Wednesday, March 3, 2010

Berkeley Yacht Club will be hosting the 2010 Sarcoma Cup

Howdy Sailors –

In our continuing efforts to provide you with the best possible regatta experience, and after months of top secret meetings with deep-pocketed sponsors, interviewing prospective host yacht clubs, carefully reviewing their extensive application forms, and performing thorough background checks, we have finally reached a decision. Our complex application scoring process heavily weighted kick-ass sailing, parties that would be illegal in most states, and dedication to this charity cause. One applicant towered above the rest…

…those wild and crazy folks at the Berkeley Yacht Club will be hosting the 2010 Sarcoma Cup !!! Congratulations BYC !!

Unfortunately, we are still sworn to secrecy on some of the event’s details. You may have heard rumors about special appearances by some of the SI swimsuit models at this year’s Sarcoma Cup. At this time I can neither confirm or deny these rumors. As soon as we can declassify the rest of the event details we will be making further announcements. Stay tuned.

So, far the following fleets have committed to the event and have it on their calendar:


Express 27


Alerion 28

Viper 640

Open 5.70

Santana 22s (Sunday)

So, if your fleet is not on this list, now’s the time to fix that J. Do your sailing friends a favor and pass this email on.

We will also be posting updates at


Mark Lowry

2010 Sarcoma Cup Regatta Co-chair

Express 27, #68, “Xena”


On behalf of your 2010 Sarcoma Cup organizing committee

Monday, March 1, 2010

BeatSarcoma 2010 Fun Run - Registration Opens!

Registration for the 2010 BeatSarcoma Fun Run/Walk is open!!! We are introducing a 'Fun/Themed/Costumed' category, a 1K and a 'Pet' category!

Come join us!

- if you are interested in volunteering, email

Come join us in Golden Gate Park -
Fun Run to raise funds to fight sarcoma. The sarcoma is a cancer that primarily affects children and young adults.

Thursday, February 11, 2010

Sarcoma International Awareness Week - bring your ideas for a BeatSarcoma Team!

The International Sarcoma Awareness week (ISAW) is also known as the Team Sarcoma Initiative (TSI). It is an internationally coordinated set of events to raise awareness of sarcoma and raise funds to support sarcoma research, clinical trials, and patient and family services. This annual effort consists of a wide variety of events that are held worldwide during the same week. Over 16,800 people participating in 2009, doubling last year’s participation and far surpassing our goal of 10,000 participants. 30 medical centers and 25 sarcoma advocacy groups were among the groups that hosted the 90 events that were held globally. Over $450,000 was raised by teams to support various cancer centers and advocacy groups.

The mantra of the Initiative is “Sarcoma Knows No Borders.” We use this phrase because sarcomas can occur anywhere in the body and they don’t discriminate based on age, gender, race or nationality. People from all over the globe participate in Team Sarcoma Events ― young and old, women and men, from countries across Europe, through Asia and Pacific regions, and in North, Central and South America.

Committed and caring people around the world have made the Team Sarcoma Initiative more successful each year. Our goal in 2010 is to have 20,000 people involved in a life-changing Initiative. Families are invited to plan events in their communities to increase awareness or raise funds for sarcoma research. Advocacy groups and cancer centers are invited to plan events that will strengthen their ties with patients and increase their reach. Whether enjoying a backyard barbeque, an educational seminar, or a thrilling race: Together, we are making a difference!

Help BeatSarcoma be a part of this - email us your idea at info at beatsarcoma dot org, or through comments on the blog/messages on our Facebook page:

Sarcoma Educational Conference

Sarcoma Educational Conference

The SFA’s 5th annual Educational Conference, Ask the Experts: Advances in Sarcoma Treatment and Research, will be held on Sunday, April 25, 2010 at the Park Lane Helmsley in New York City from 11:00 AM to 3:30 PM. One of the best aspects of the conference is that there is an hour question and answer session from the audience. This year we expect the conference to reach new heights and hope you will join us. Confirmed speakers are Dr. George Demetri from Dana-Farber Cancer Center speaking on What is Targeted Therapy and Where are we Going, Dr. Shreyaskumar Patel from M.D. Anderson speaking on Leiomyosarcoma, Dr. Paul Meyers from Memorial Sloan-Kettering speaking on Osteosarcoma, Dr. Jeffery Toretsky from Lombardi Comprehensive Cancer Center at Georgetown University speaking on Ewing’s Sarcoma, Dr. Jean Yves Blay, President of the European Organisation for Research and Treatment of Cancer will be speaking about the European Sarcoma Drug Approval, and Dr. John Brooks from the University of Pennsylvania will discuss advances in Sarcoma Pathology. Tickets and hotel information is available on

Thursday, January 28, 2010

Fun Run 2010 - Keep the date!

Hello fellow racers toward a cure!

The BeatSarcoma Fun Run 2010 is ON! It will be held on April 25, in Golden Gate Park, in San Francisco. There will be a 1K, a 5K and a 10K course.

More details to follow soon! Any question, please email funrun at beatsarcoma dot org.

If you want to keep memories of last year's run, you can get the BeatSarcoma Fun Run calendar by clicking here! It's good training :-)

We look forward to seeing you all there!

Friday, January 22, 2010

Join the BeatSarcoma Dance Marathon in Austin this weekend!!!!

We are a group of Anderson High school seniors who have partnered with the charity BeatSarcoma to create a fun event that can benefit sarcoma research: a Dance Marathon. BeatSarcoma is a non profit organization completely devoted to raising awareness of sarcoma cancer and support for research. Sarcoma is one of the lesser funded cancers for research. All donated funds you give will go directly to research. This marathon is BeatSarcoma’s FIRST Texas fundraiser. For more information on BeatSarcoma and our mission please see Mission page. We are devoted to BeatSarcoma’s mission and want you to have a great time!

Now if you have never been to a dance marathon, there is just one main thing you must remember-

Dance Dance Dance! The last team on the dance floor just might win a prize!

Dinner is included!!!

Come help us beat sarcoma AND show off your moves! So let’s dance!

Sunday, January 17, 2010

BeatSarcoma makes a $30,000 research gift to Stanford Cancer Center to support Sarcoma Research

December 2009
After a very successful 2009, Nathalie Criou, President and Nathan Bossett, CFO, of BeatSarcoma presented Dr. Amreen Husain, associate professor of Gynecologic Oncology at Stanford University a $30,000 research gift to further her efforts around sarcoma research.

'We are pleased to contribute to local research institutions and help stimulate professional interest and research around sarcoma-related problems. Independent and fresh ideas are critical to successful research outcomes' says Criou.
The current knowledge of sarcoma is so scarce that any discovery is a home run - and represents a huge improvement over the current knowledge base.
Dr. Amreen Husain notes:
'The sarcoma team at Stanford Cancer Center thanks BeatSarcoma for its continued support and applauds its efforts to raise public awareness of this challenging disease.

Thursday, December 31, 2009

2010 Calendars for sale!

BeatSarcoma, Fun Run and Sarcoma Cup calendars are ready for sale on the BeatSarcoma online store.

100% of the proceeds from these sales will go to BeatSarcoma.

Saturday, September 5, 2009

Sarcoma Cup 2009 Shirts for Sale

You can still buy Sarcoma Cup 2009 Shirts online on the BeatSarcoma store

Tuesday, August 25, 2009

Initial Sarcoma Cup Photos Posted

More to come over the next few days - check back regularly for updates!

Wednesday, August 12, 2009

Patient Education Program - August 12th at 6PM PST

A Team Approach for Treating Sarcoma in Children and Adults that will be posted on August 12th at 6:00pm PST. Sponsored by Seattle Cancer Care Alliance, you will hear more about the importance of a multidisciplinary team and common overlaps between treating children and adults with sarcoma. With Dr. Chappie Conrad

To hear this program, along with many other programs, visit our website at All programs are hosted by 13-year leukemia survivor, and founder of Patient Power, Andrew Schorr.

Patient Power also provides such programs 'on demand' for the benefit of patients.

Tuesday, July 14, 2009

Donate $1 to the Sarcoma Cup - send $5 to Sarcoma Research

Give $1 to the Sarcoma Cup - and the energy of our volunteers will strive to transform it into $5 for sarcoma research! The Sarcoma Cup is a multiplier of your generosity!!!

Please enter the four numbers printed in black ink above the embossed account number on the front of your American Express card.

Monday, July 13, 2009

Please Help BeatSarcoma By Writing a Review for the 'Cancer Fighters Award'

Dear fellow racer toward a cure,

Thank you so much for all the help you have given BeatSarcoma in the past couple of years - we are off to a great start and are super excited about the future. We are getting ready for the Sarcoma Cup 2009 - -

It would mean a lot to us if you can help us gain visibility in the nonprofit community by writing a small review: The deadline for this is July 31st

This could be a great tool for volunteers who may consider working with us in the future, donors and sponsors who will consider how responsibly we have treated the money and resources they entrusted us with - as well as research institutions who may approach us in the future with promising projects.

For some of you, this is a reminder - feel free to circulate this among anyone who has come to know our organization. Full context below.

On behalf of our entire organization, I thank you.

Nat Criou
President and Founder
BeatSarcoma Inc.

---------- Forwarded message ----------



It's been a whole week since the launch of the 2009 Cancer Fighters Awards. Check out your reviews, if any, at

If you don’t yet have any reviews, there is still time to take advantage of this completely FREE opportunity! (See which cancer fighting nonprofits are in the lead right now at

Make your work visible to potential supporters and donors. Ask your volunteers, clients, donors, and board members to post reviews about their experiences with you!

Whether you are a local organization or a national one, you can gain visibility by participating in the 2009 Cancer Fighters Awards. This opportunity is completely FREE of charge.

The nonprofits with the most positive reviews within their size category – small (less than $250K in budget), medium ($250K – $1M) or large (more than $1M) – or their geographic region, posted by July 31, 2009 will be featured on GreatNonprofits, Planet Cancer, AND on, the premier site for philanthropic research. All reviews will also appear on your GuideStar nonprofit report.

You can also later use these reviews in your marketing, fundraising, and brochures!

This is an opportunity for you to engage your stakeholders – clients, volunteers, board members, donors and others. They can share their experiences with one another and the larger public.

And individuals who participate have a chance to win great wellness prizes such as a free copy of "Everything Changes: The Insider's Guide to Cancer in Your 20s and 30s" by Kairol Rosenthal, free milk for a year from Organic Valley Farms, delicious baked goods from Dancing Deer Baking Co., spa packages from Osmosis Day Spa and Sanctuary, hotel stays from Joie de Vivre Hotels, and more!

Gain visibility and take this opportunity to engage your community.


Perla Ni

Wednesday, July 1, 2009

Sarcoma Cup 2009 Registration has opened!

Fellow Sailors,

The Richmond Yacht Club and BeatSarcoma would like to invite you to the 2009 Sarcoma Cup, on August 22 and 23. There will be some great sailing and some great dockside activities.

What a great value for only $1.25/ft (that's $31.25 for 25 footer, or $46.25 for a 37 footer)

  • Sailing World Magazine and other goodies in your skipper packet
  • One Design, PHRF and Cruising Division with mark racing on Saturday and long distance racing 'the island of hope' on Sunday
  • Free Wine Bar - and good ones! and free gourmet coffee (and pastries on Saturday!)
  • Free Massage
  • Live Jazz Band on the dock and Live Rock Band in the evening
  • High Value Sponsored Prizes - the winner gets a FREE HAUL OUT - here is the full list of awards

AND, win more goodies at the Raffle. Prizes include Garmin GPS 75, Sony XR3500-II car stereo, Painting, a Logitech Webcam and much more!

AND, participate in our silent auction. Items include high value sailing items, Painting, restaurant gift certificates, premium wine, home cleaning services, personalized stationary, art glass and more!

It's not all! We will be holding a RUMMAGE SALE - get great deals on sailing parts and gear or bring yours to donate! It's all tax deductible.

100% of the proceeds from the event will go to sarcoma research. Last year's event raised over $18,500. With your help, we can double that. And all you have to do is HAVE FUN!

Mark Lowry, Sarcoma Cup Regatta Chair & Nathalie Criou, BeatSarcoma President