Monday, August 29, 2016
Applying for Disability for Sarcoma
Friday, June 8, 2012
Beat Sarcoma donates $15,000 to Stanford
Monday, March 26, 2012
BeatSarcoma makes a $15,000 research gift to UCSF
“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 http://surgicaloncology.surgery.ucsf.edu/faculty/surgical-oncology/eric-nakakura,-md,-phd.aspx.
Monday, February 27, 2012
Canadians: Online Discussion for Advanced Soft Tissue Sarcoma Patients
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 Melissa.Vodopia@consumervision.ca.
Tuesday, January 24, 2012
Sarcoma Trial at National Cancer Institute
NCI Referral Office: 1-888-NCI-1937 (ncicssc@mail.nih.gov)
or
Lauren Powell, Clinical Research Coordinator: 301-451-0992 (lauren.powell@nih.gov)
Sunitinib or Cediranib for Alveolar Soft Part Sarcoma
Sponsored by: National Cancer Institute (NCI)
Information provided by: National Institutes of Health Clinical Center (CC)
ClinicalTrials.gov 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.
Objective:
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).
Eligibility:
· 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.
Contact:
NCI Referral Office: 1-888-NCI-1937 (ncicssc@mail.nih.gov)
or
Lauren Powell, Clinical Research Coordinator: 301-451-0992 (lauren.powell@nih.gov)
Locations:
United States, Maryland- National Institutes of Health Clinical Center, 9000 Rockville Pike, Bethesda, MD.
Thursday, October 20, 2011
Must-Read Articles
1. A Guide to the Sarcoma Universe for Those who Have Just Arrived (and the friends & family that support those with cancer) http://sarcomahelp.org/newly_diagnosed.html
2. The Importance of Second Opinions for Sarcoma
http://sarcomahelp.org/sarcoma_second_opinions.html
3. The Importance of Treatment at a Specialty Center for Sarcomas http://sarcomahelp.org/learning_center/articles/sarcoma_centers.html
4. Psychological Adaptation, Coping, and Distress in Adult-Onset Soft Tissue Sarcomas http://sarcomahelp.org/coping.html. 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
sarcomahelp.org
6. Guidelines for newly diagnosed sarcoma patients and their families.
http://sarcomahelp.org/newly_diagnosed.html
Thursday, August 25, 2011
Sarcoma Cup 2011 AUCTION
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 http://www.sarcomacup.org.
Wednesday, August 10, 2011
Announcing the 2011 Sarcoma Cup: Aug. 27-28
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 www.sarcomacup.org. 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
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: http://www.23andme.com/sarcoma
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.
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
Friday, February 18, 2011
Research Update - sarcoma
Pape' Family Pediatric Research Institute, Department of Pediatrics, Oregon Health & Science University
Tel 503.494.1210 Fax 503.418.5044 keller@ohsu.edu
Monday, October 11, 2010
BeatSarcoma makes a $20,000 research gift to UCSF
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.
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, 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
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
Saturday results: http://www.regattanetwork.com/clubmgmt/applet_regatta_results.php?regatta_id=3172
Sunday results: http://www.regattanetwork.com/clubmgmt/applet_regatta_results.php?regatta_id=3175
Alerion and J105 Results: http://www.regattanetwork.com/clubmgmt/applet_regatta_results.php?regatta_id=3172
Photos:
On the water photos: http://photo.beatsarcoma.org/Events/SarcomaCup-2010on-water
Shore photos: http://photo.beatsarcoma.org/Events/SarcomaCup-2010/13526778_QQ2oh#986119627_6dP42
Note: we will be making calendars with these photos - they will be available for sale during the holiday season. Ping us if you'd like to see a calendar made out w/ photos of your boat!
News coverage:
Latitude 38 Coverage: http://www.latitude38.com/lectronic/lectronicday.lasso?date=2010-08-30&dayid=473
Norcal sailing writeup: http://www.norcalsailing.com/entries/2010/09/01/sarcomacup.html
Pressure Drop writeup: http://pressure-drop.us/forums/content.php?605-5-70-s-Rock-The-Sarcoma-Cup
Pressure Drop Video: http://www.pressure-drop.us/forums/content.php?615-Sarcoma-Cup-Gets-Downright-Sexy
Pressure Drop Writeup (from a participant): http://pressure-drop.us/forums/content.php?619-Sarcoma-Cup-2010-Saturday-Buoy-Racing
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 beatsarcoma.org. 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
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.
BeatSarcoma 2010 Fun Run
Sunday, April 25, 2010
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:
J105
Express 27
Wabbit
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 http://www.sarcomacup.org/
Cheers,
Mark Lowry
2010 Sarcoma Cup Regatta Co-chair
Express 27, #68, “Xena”
RYC
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 in Golden Gate Park -http://www.beatsarcoma.org/BeatSarcoma_Fun_Run_2010.html
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: http://www.facebook.com/pages/BeatSarcoma/87644801313?ref=search&sid=1091717098.708275870..1
Sarcoma Educational Conference
Thursday, January 28, 2010
Fun Run 2010 - Keep the date!
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 2009After 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!
Saturday, September 5, 2009
Sarcoma Cup 2009 Shirts for Sale
Wednesday, September 2, 2009
Tuesday, August 25, 2009
Initial Sarcoma Cup Photos Posted
Wednesday, August 12, 2009
Patient Education Program - August 12th at 6PM PST
To hear this program, along with many other programs, visit our website at www.patientpower.info. All programs are hosted by 13-year leukemia survivor, and founder of Patient Power, Andrew Schorr.