NEWSLETTER
We continually hear from patients about the challenges they face in receiving an official sarcoma diagnosis. Sarcoma is complex—there are more than 100 distinct subtypes—and that complexity often leads to delays in diagnosis and treatment.
We frequently share statistics that underscore this concern. One of the most telling: 57% of patients first see a general physician for their initial symptoms, yet only 7.7% of general physicians are the first to suspect sarcoma. This gap makes it clear that more education is urgently needed—not only for general physicians, but also for oncologists and other specialists who may encounter sarcoma patients early in their journey.
Honoring Our 30th Anniversary
This year, we celebrate 30 years of commitment to sarcoma patients, survivors, and their families. This is an amazing milestone for any organization, but it is an even larger achievement when you consider that we are the oldest sarcoma organization in the world. This milestone represents years of supporting patients, educating the public about sarcoma, and creating a community where everyone facing sarcoma knows they are not alone.
As we prepare for this incredible anniversary, we reflect on the thousands of lives touched and the countless stories of courage and resilience. Our journey together demonstrates the power of unity and compassion to change lives for the better.
A global Sarcoma patient advocacy group is working on planning for Sarcoma Awareness Month (July) 2026. Part of that planning was a survey with the question: "what are the challenges of Sarcoma, as you see them?
Here is my answer:
During this time of the year, the board, committees, and staff are working to create our mission-focused plan of programs and events. We are hopeful that you may consider providing your feedback to help guide our priorities for the coming fiscal year. As we continue to bring hope, education, and support to the Sarcoma community, your insight ensures our work reflects what matters most to you — and to those we serve.
Thank you for taking a few minutes to share your thoughts.
Starting in 2026, the new One Big Beautiful Bill Act (OBBBA) will bring some big changes to how charitable deductions work.
That means the gifts you make this year could go further both for the causes you care about, like the mission of the Northwest
Sarcoma Foundation, and for your own tax savings.
Fundraising Tips
Ask your family – even that cousin you only see once a year.
Ask your friends – post on social media, you never know which old
classmate will support you.
Ask your coworkers – many have supported cancer walks before,
now it’s your turn to invite them.
Most importantly: ASK!
As we approach our biggest events of the year — the annual Dragonslayer Fantasy Dash & Strut — we’re calling on you to help us make a powerful impact. These fall fundraisers provide nearly 55% of our annual program budget, which fuels critical initiatives like Sarcoma research, Help$ Grants, family fun events, and patient education nights.
I first joined the Northwest Sarcoma Foundation in 2020, shortly after my husband died of Rhabdomyosarcoma. Covid had just begun and the world had pivoted to online activities. I was so impressed at how the organization adapted to new Covid restrictions. NWSF responded quickly by creating Zoom groups for patients, for caregivers, and for people who had lost
someone to Sarcoma. They revamped a previous Care Package program, because patients needed that contact and support more than ever. NWSF used Zoom to share Researcher Update Nights for our whole 5-state region. I felt a sense of pride and purpose in joining such an
impactful organization. I became more involved and eventually joined the board in 2023.
Summer is here, and at the Northwest Sarcoma Foundation, it's time to gear up for some of our most important events and restock our care package supplies.
The care package program is especially close to my heart. When my sister was battling Synovial Sarcoma, I know she would have deeply appreciated receiving one of these packages. After she passed, a bereavement package would have meant the world to my family—offering comfort during one of our most difficult times.
During the month of April, I had the privilege of attending two impactful conferences.
The first was with Servier Pharmaceuticals, an intimate and inspiring gathering of organizations working to create meaningful
change in the world of medicine. I was honored to be included in this group and had the unique opportunity to tour their labs—
witnessing firsthand the incredible research and development efforts taking place. The innovation and commitment at Servier are
truly inspiring.
Thank you to everyone who makes Northwest Sarcoma Foundation a thriving resource of hope, education and support for patients and families in the Pacific Northwest and beyond. I have been involved with NWSF since shortly after I arrived in Seattle two and a half years ago- and this year I have been lucky enough to join the board. As a surgical oncologist at Fred Hutch Cancer Center, I have a personal relationship with the sarcoma community, and I have seen firsthand the impact of NWSF on sarcoma patients and their loved ones.
The sarcoma community is not one that any of us thought we would join, but community is what gets all of us through. Community gets us through the flux of new terms and treatments. It connects us to information and resources. It helps us navigate this new and uncertain territory. And the sarcoma community provides us opportunities for fun, moments to forget the uncertainty, if only for a little while, and just enjoy being together.
As 2024 closed, and I was watching many of the holiday shows available, I couldn’t help but be aware of the numerous ads from various non-profits seeking anywhere from $11 - $19 per month; one stating they needed over 1,000 new donors right then and there. This prompted me to think about how these numbers break down for us. We have only had our recurring donor option for about three years, and we are slowly growing the number of recurring donors each year - thank you recurring donors.
I am excited for what we are bringing to the table this year. We are changing up some of our long-standing events, inviting you to join us as we make way into our new future. We will have some new volunteer opportunities and some not so new, please consider helping to make a positive impact on a patient’s life. Learn more about our committees, and look for announcements for volunteers through our website, social media, and emails.
My new years resolution is to help take NWSF to the next level and expand our reach into the community and inform others of our “Dare to C.A.R.E. about the Rare” campaign. I ask you to also Dare to C.A.R.E. about the Rare!
We are committed to the mission of providing hope, education, and support to anyone affected by Sarcoma in
the PNW while investing in Sarcoma research for better treatment outcomes.
This mission is funded by you! As a donor, you make a critical impact. You are helping make significant strides
in support of our Sarcoma community.
Your commitment will help transform the lives of all who are diagnosed with Sarcoma and their loved ones. We
are grateful for your generosity and kindness of spirit. We ask that you, Dare to C.A.R.E. about the Rare.
From the People We Serve:
July 27th, 2023...Weary, so very tired, and to be honest… holding on to Hope, by the very tips of my fingers. I asked my now 30-year-old son,
“George, Are you angry at God?" As he struggled to step closer to me, each step full of so much pain, George placed his large hands on my shoulders, looked down at me, with such conviction, and said, “no way! Mom, God didn’t do this; God is getting me through this. If it wasn’t for God, Mom we wouldn’t be back together. God used my cancer to bring us back together.”
From the People We Serve:
So while you walk today, remember Tre. Remember to laugh a lot and love your people. Remember to do something worthwhile. Remember to get help when you need to so you can heal, both physically and mentally. And remember that it doesn't take much to make a difference in the lives of others.
It's Sarcoma Awareness Month! Why do you wear yellow? Send your why and a photo to info@nwsarcoma. org.
New Day Northwest hosts board member, Elana Emlen and Executive Director, Jo McNeal to share about the anywhere cancer few have heard of during July's Sarcoma Awareness month!
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Watch the video HERE
The first 1/2 of 2024 has been busy. During 2020 - 2023, we had to set aside some programs that took us into the community. Programs that emulated our mantra: no one should face Sarcoma alone. Not that we abandoned our Sarcoma patients, survivors, caregivers, or those who have lost someone, but we were not able to connect further in person. Well, I am thrilled to say that is no longer!
Dear friends and family of the Northwest Sarcoma Foundation. I have the pleasure of writing the
opening segment/section for our May newsletter. My name is Michael Lillie I am one of 3 new board
members for 2024. Myself along with Bill O’Connell, Mike Bell, and Nick Casillas are excited to share
some of our ideas and experiences to help broaden the reach with NWSF this year.
They say that as you get older time goes faster, I do not quite know what to make of it, but lately I am seeing the truth in this common phrase. It is so hard to believe that it is already April and 1/4 of the year is already gone. The questions I have for you today are two: What have you done with the time that has already passed, and what do you have planned for the remainder of 2024?
Hi, I'm Nick - a Northwest Sarcoma Foundation Board member, sarcoma survivor of almost 30-years, husband of an amazing wife, father of two precocious daughters, and companion to a fluffy Bernese Mountain dog - it's great to meet you!
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A Message from Chappie Conrad, 2024 president and founder​
Dear Sarcoma Patient's Families and friends,
Happy New Year and best wishes to you all for the New Year.
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