2017 Rare Disease Day

 

Did you know February 28th is National Rare Disease Day?

Chances are you had no idea. The same is true for most people when asked about sarcoma. Unfortunately many rare diseases like sarcoma are overlooked by the general public, decision and policy makers who have the ability to direct funds for research and treatment advancement. If only they knew of the devastating effect sarcoma has on lives patient’s and their families…

THIS IS YOUR CHANCE TO BE HEARD! 

Read more: 2017 Rare Disease Day

The Northwest Sarcoma Foundation Receives Funding for Sarcoma Outreach Program

The Northwest Sarcoma Foundation (“NWSF”) was among 10 organizations to receive grants from the OHSU Knight Cancer Institute Community Partnership Program (“Community Partnership Program”) this funding cycle.  This is an exciting opportunity and fuels our mission to provide support for Sarcoma patients. Outreach programs, for Sarcoma patients, are as rare as the cancers themselves.  The grant award will fund preliminary research for creating an outreach program tailored to the specific needs of Sarcoma patients. The grant work includes; a broad-based survey, literature review and focus group.  The goal is to learn how we, as a community, can support families fighting rare cancers.  The hope is to provide an outreach program that will help reduce stress, provide support and improve treatment outcomes.  

The project is funded through the Community Partnership Program. This program is designed to build sustainable collaborations with Oregon communities by providing grants and other resources to foster development of community-identified cancer prevention, early detection,treatment and survivorship projects. The OHSU Knight Cancer Institute has made a decade-long commitment to invest in this program to develop robust, sustainable programs that benefit the health of all Oregonians. Additional information about the program is available on the OHSU Knight Cancer Institute’s website.

Director's Circle

The work of our foundation goes far beyond writing checks to patients and research institutions. As we reposition our foundation as a full support and advocacy agency, it’s crucial that we work together.
That’s why we formed the Director’s Circle. It’s a group of people who support our foundation’s work beyond our core programs.

Members of the Director’s Circle will receive special weekly and monthly updates on our activities. They will also get privileged access to our finances, including our performance to budget. Lastly, the Director’s Circle will be consulted quarterly to maintain a strong connection with the sarcoma community.

Director’s Circle Benefits:

  • Special insights into foundation activities and finances
  • Consultation with foundation leadership on programs and growth strategy
  • Involvement in the growth of the ONLY regional foundation dedicated to the sarcoma-fighting community

The Director’s Circle is an invite-only group. If you would like to be considered for membership, email This email address is being protected from spambots. You need JavaScript enabled to view it..

November Update from Chris Dantzscher

 Click here for more information on this partnership
 
Referrals WORK!
In late October I met with Jason Sears to turn over the first two contributions from our Community Partnership with the NW Sarcoma Foundation.   These two contributions were the result of a simple referral, from a couple of folks I had met earlier in the year.   One knew a neighbor that was looking to become a buyer after having been so frustrated as a renter for the last couple of years.  The second referral was a seller that had been following me on Facebook and been watching the increased attention with my efforts of the Dragon's Last Dirty Ride, back in July.
          These two simple gestures resulted in $1000 being donated to the NW Sarcoma Foundation, thus highlighting the potential of this relationship.   And this, from just a single month!  So, if you know somebody who is looking to sell OR buy in the greater Seattle area, please mention my name or forward this email onto them.  
 
 
Stories from the Vineyard:
In late October, The NW Sarcoma Foundation holds a wonderful dinner/fundraising event called Stories for the Vineyard.  It's an honor to attend and I'm grateful to have received the invite this year.
This year, the event raised nearly $130,000 in support of the cause.  One of the easiest ways to learn more about the Foundation is to simply follow them on Facebook.   Click the icon to go to their page and 'like' them to follow.   It's one of the most rewarding pages on Facebook and you'll become more educated about Sarcoma research, about the people who are affected and about what simple gestures you can do to participate in making the world a better place.
 
 
Events to mark on your calendar:
In April of  next year, I will be hosting my first ever 'Team';  We'll go for a morning walk, around a lake and park, we'll meet new people and raise some cash for the cause.  I invite you to come join me!  Bring your neighbor.  Bring your dog.  Come for a morning walk and be a part of this wonderful community.   If you think you might be interested, click the link to sign up for more information as the event approaches!  I look forward to seeing you this Spring.
 
This email address is being protected from spambots. You need JavaScript enabled to view it. / 425-890-7460

Patient Education Series: Sarcoma Clinical Trials

Katie and Jennifer

Watch the video here!
You can still submit your questions to Jennifer by email: This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Join the conversation on our Smart Patients forum [Sarcoma trials search | Online tirals discussion]

Are you interested in learning more about the clinical trials offered for the treatment of sarcoma? Join us November 29th as we discuss the “CLINICAL TRIAL BASICS” with current Leiomyosarcoma warrior Jennifer Ensey.

Jennifer has participated in two clinical trials in additional to multiple other treatment options. Her aggressive and proactive approach to her treatment process has kept her sarcoma at bay for over 7 years. LIVE on Facebook Thursday November 29th Jennifer will explain what a trial is, how to choose a trial, and her experience as a patient in sarcoma clinical trials.

This series will also include a question & answer segment. Questions for Jennifer pertaining to clinical trials or her story can be submitted by email to This email address is being protected from spambots. You need JavaScript enabled to view it.. We will answer as many questions as possible during the video presentation. Some questions may be answered in follow-up sessions or directly via email.

Jennifer received the following treatments/medication during clinical trials:

  • Tribectedin - Now FDA Approved for Sarcoma Treatment -On October 23, the Food and Drug Administration (FDA) approved trabectedin(Yondelis®) for the treatment of two subtypes of soft tissue sarcomas: liposarcoma and leiomyosarcoma. The approval is for patients whose cancers are advanced or cannot be removed by surgery and who have already been treated with anthracycline-based chemotherapy.
    Source: https://www.cancer.gov/news-events/cancer-currents-blog/2015/fda-trabectedin-sarcoma
  • Dacarbazine: Dacarbazine is used for metastatic malignant melanoma, Hodgkin's disease, soft tissue sarcomas, neuroblastoma, fibrosarcomas, rhabdomyosarcoma, islet cell carcinoma, and medullary carcinoma of the thyroid.
    Source: http://chemocare.com/chemotherapy/drug-info/dacarbazine.aspx

After the video airs on November 29th the Northwest Sarcoma Foundation invites you to continue the conversation on our online forum via SmartPatients.com. This online community provides a place for patients, and caretakers to connect with other people affected by sarcoma. Have a question, or just need someone who can relate? Connect on SmartPatients! 

Not able to tune in on November 29th? No problem! The link to this and future Educational series videos can be found here!

It's time to #UncoverSarcoma in the Northwest!

It’s time to #UncoverSarcoma in the Northwest! Whether you are a current sarcoma fighter, a survivor, or honoring someone we’ve lost to the disease, we invite you to join our community. Together we support each other, and work to raise awareness and funding to END SARCOMA CANCERS AS WE KNOW THEM! Help us FIGHT BACK!

 

Uncovering Sarcoma in the Northwest 

 

Here’s how YOU can help UncoverSarcoma:

  1. Join our movement - like our facebook page and stay connected to our community building efforts.  You can also get ready to join one of our advocacy events: Dragonslayer Seattle, Dragonslayer Portland, Dragon's Last Ride Bellevue, Dragon's Last Ride Anchorage, and several patient education conferences!  Check our website for dates and more information on our 2017 schedule.

  2. Join the conversation - Folks are already sharing great ideas on our online forum! We’ve setup a moderated forum with SmartPatients, a trusted provider. Signup here.  
    SmartPatients is a for-profit company that provides moderated forums for companies conducting healthcare-related collaborations.  As a member, you will NOT be advertised to!
     
  3. Share your story! We want to hear from YOU - send your story to This email address is being protected from spambots. You need JavaScript enabled to view it. and contribute to our community storytelling initiative.  
    We're assembling a video and article that includes elements from many stories across the sarcoma community.  We'd love to include yours!  If you're feeling brave, record yourself telling your story, and share it with us!  You will inspire others!
     
  4. Support the cause! Your donation will fund our programs: financial assistance for families buried under medical bills, research programs making sarcoma treatment breakthroughs, and social support so no one has to face sarcoma alone.  Donate here, and choose the program you'd like your contribution to be sent!
    Our foundation raises $250,000 every year to support our programs and run our foundation.  We can't do it without you!

 

Follow our Journey!

Executive Director Jason Sears has been meeting with sarcoma patients, researchers, and doctors to learn more about what's happening in the sarcoma community.  Check out these Facebook Live videos by clicking the links!  

 

Jason Sears and Dr. Druker

Hear from the Dr. Druker @OHSUKnight, director of the Knight Cancer Institute, the newly formed cancer research hub in Portland about their innovative approach!

Jason Sears and Dr. Loggers

Hear from Dr. Loggers @UWMedicineNews about the innovative and diverse sarcoma research she is conducting, in addition to seeing patients! 

 

 Jason has his head shaved on stage

Watch Northwest Sarcoma Foundation Executive Director, Jason Sears, have his head shaved after meeting his goal of raising $5,000 to support patients in treatment with gift bags!

 

Jason Sears and Dr. Kim

Hear from Dr. Ed Kim @UWMedicineNews about the innovative radiological treatments and the science behind it all!

Jason Sears and Dr. Pollack

Hear from the world’s only immunotherapy sarcoma researcher Dr. Seth Pollack at @HutchinsonCenter about his ground-breaking work and trials!

 

Jason Sears and Bretton

Hear a touching story of fighting sarcoma from Bretton, who is standing up to his disease with courage. Bretton fights sarcoma with humor, but knows exactly what's needed: time to find a cure!

Jason and Bretton

Hear from Jason Sears, Executive Director of the Northwest Sarcoma Foundation, about why we are working so hard to #UncoverSarcoma.

Dragonslayer picture that inspired the walk

New to the Northwest Sarcoma Foundation? Watch this great intro video!

Every year thousands of people affected by sarcoma cancers walk in solidarity in Dragonslayer Walks that take place in Portland and Seattle. It's a chance to gather, remember, and raise our voices!

 

 

The Northwest Sarcoma Foundation is the only regional, local sarcoma advocacy group that’s focused on building community and making a difference in the way we treat rare cancers.

Cancer Moonshot is Our Shot!

Cancer Moonshot 2020

National Cancer Moonshot 2020

August 2016
By Sarah Wallace and Jason Sears

Throughout history, there has been a multitude of accomplishments made on earth that were once thought to be impossible. Landing on the moon seemed crazy until we did it! How did we get there? Through funding, research and a great deal of collaboration. Neil Armstrong and Buzz Aldrin didn’t do it themselves. They had teams researching, analyzing and developing methods that eventually got us to where we wanted to be–on the moon.

Over the years people have said that there is no cure for cancer. It is impossible to cure the variety of different types and to put an end to it entirely. That is where the Cancer Moonshot comes in.

 

Overview

A focused collaboration to end cancer as we know it.

Joe Biden Moonshot Interview

Joe Biden spent his summer months traveling around the country to
announce the exciting new national initiative to accelerate progress
toward ending cancer as we know it.

The National Cancer Moonshot 2020 initiative , headed by Vice President Joe Biden, aims to change the way we see cancer. In order to avoid the late detection of cancer and harmful treatments such as chemotherapy and radiation, efforts will be focused on researching new methods of detection, treatment, and prevention. A much needed $1billion dollars will go into these efforts. 

Collaboration is key here. The collective atmosphere will help to provide a unique scope of ideas, readily available research and information and funding where it is needed the most. On June 29th Cancer Moonshot Summits were held all over the country. Organizations like Fred Hutch Research Center, who are very invested in this initiative, took part in a day full of discussions around Cancer Moonshot efforts.

VP Biden has asked for any ideas for the Cancer Moonshot to be submitted here. Whether your work in the medical field or you’re just an American citizen–all ideas are welcomed and encouraged!

 

What does this mean for rare cancers?

Better treatments.

 The Cancer Moonshot means new hope for rare cancers.  These rare types of cancer typically come along with body-damaging treatments and sometimes a grim prognosis. Research focusing on individualized vaccines and immunotherapy will hopefully lead to treatments that help cancer patients not only battle cancer more effectively but thrive with cancer.

 Rare cancers, like mesothelioma, sarcoma, leukemia, lymphoma, and so on, will be able to rely more heavily on alternative immunotherapies. Advanced antibody therapies like Keytruda and Opdivo are already beginning to help mesothelioma patients, and immunotherapies like Pembrolizumab are showing promise among both soft and bone tissue sarcomas. These pharmaceuticals are being used in clinical trials, which will be more accessible for patients with the Moonshot initiative. The more research that stems from the Cancer Moonshot, the better these drugs will get–further helping cancer patients.

 

How can I get involved?

Pick a cause and show support!

 We must all band together. Government agencies, physicians, oncologists, research organizations, academic organizations, insurance companies and technology companies are all pooling resources to help accelerate this program. Additional media coverage will help to spread the word, and every single person is encouraged to be a part of the initiative in any way they can.

 Now is a great time to support cancer research initiatives.  The Moonshot initiative is injecting optimism and focusing attention on hundreds of foundations and institutions fighting to cure cancers.  The Northwest Sarcoma Foundation is supporting the immunotherapy work done by Dr. Seth Pollack, who is currently running three separate trials, each uncovering effective treatments for sarcomas.

 

For more reading on the Cancer Moonshot feel free to check out the following:

Cancer.gov–Cancer Moonshot

MAACenter.org–Moonshot Infographic

Medium.com–Achieving Lift Off

Welcome Bob Ortblad

Team Ortblad at Dragonslayer 2015

Bob Ortblad accepting the award for the "Top Fundraiser"
at Dragonslayer 2015

Northwest Sarcoma Foundation is honored to announce the addition of Robert V. "Bob" Ortblad to its Board of Directors. Bob is a seven-year survivor of sarcoma and has been a strong supporter of the Foundation's mission and an active member of the community since he first learned of its existence. You may recognize the name Ortblad and, if so, it's probably because Bob and his wife Katherine have captained a perennial Dragonslayer team, have been members of the Ambassador Board, and have served on the Stories from the Vineyard gala committee, as well as being major donors to the Foundation Help$ programs. Please join us in thanking Bob for taking this additional step to help serve the sarcoma community and for all of the gifts he and Katherine have brought to the sarcoma community thus far.

Learn more about Bob and our other board members HERE. For more information about opportunities to become involved with the Foundation contact This email address is being protected from spambots. You need JavaScript enabled to view it..

Welcome Katie!

Katie HornerNorthwest Sarcoma Foundation is very pleased to announce the addition of Katie Horner to its team of staff. Katie brings particular passion to the position of Washington Regional Director because of her personal experience with sarcoma cancer―it took her mother, the inspiration for Dragonslayer Team Karla, from her and her family. Katie has been in the position of being a Dragonslayer alongside her mother and in memorial to her mother. Since then she has mobilized volunteers, assisted administrators, and organized events to honor those affected by sarcoma cancer. This experience, as well as that which she gained running her own business from 2008-2013, has provided her with the skills to step into the Regional Director position and begin making an impact in short time.

You can read Katie's heartfelt cover letter here and resume to learn more about her background.

Please join us in welcoming Katie to the team. She can be reached at (206)-259-0444 or This email address is being protected from spambots. You need JavaScript enabled to view it..

 

Pictured: Katie with her son Carter at the 2016 Seattle Dragonslayer walk

 

MY STORY: Why I am a Dragonslayer

Although this is my first year organizing the Dragonsalyer walk as an employee of the Northwest Sarcoma Foundation, I have been a Dragonslayer for many years. Since 2007 my family and I have organized Team Karla in memory of my mother Karla Hill. She is the reason I am a Dragonslayer.

 

Karla Hill 3/17/1965 - 9/28/2007

mom tubing picture.jpg

 

As an only child  I grew up very close to my mother. She was my best friend, and my biggest supporter. We did everything together and had a great time doing it! Mom had an incredible energy that turned even the most mundane activities into an exciting adventure. She was active and a health nut; definitely the last person we would expect to have cancer.

 

Entering early adulthood without a mother was a tough road, especially when you have watched your mother be taken by a disease like sarcoma. This is the reason I continue to fight the sarcoma dragon today. I hope my efforts can someday ensure no one has to lose a loved one to sarcoma.

 

Team Karla has kept mom’s memory alive since her passing September 28, 2007. Her friends and family join us every year to remind us of the good times, her incredible energy, and the impact she continues to have on so many people’s lives.

DONATE HERE!

 Cancel Cancer Team Jumping for joy

Help us END SARCOMA and ensure 
NO ONE FACES SARCOMA ALONE

 Our Tax ID: 91-1717600

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