NEWS
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.
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!
​
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.
​
Exciting news within the Sarcoma community. A new treatment for Desmoid Tumor has been approved by the FDA.
Intro: Dr. Michael Wagner - Board Member
It is with mixed emotions that I left Seattle and the beautiful Pacific Northwest in September to start a new job in Boston.
Intro: Jo McNeal - Executive Director
Go Dragonslayers! We have wrapped up another amazing September of Dragonslayer Walks.
Intro: Chappie Conrad - Board Secretary
I hope that you are all doing well and were able to have an enjoyable summer without dealing with medical issues. This organization is near and dear to my heart because we started it more than twenty years ago in honor of all our Sarcoma friends and families. We are one of the oldest Sarcoma patient support groups in the US and the only Sarcoma group dedicated to supporting Sarcoma patients and families from the Pacific Northwest. We are also one of the first patient support groups to give Sarcoma patients a financial grant to pay their bills or pursue a second opinion for their care.
Intro: John Anderson - Board Treasurer
We hope everyone is enjoying the summer, staying cool, and making plans to attend one of our Dragonslayer Walks during September. Dragonslayer has been an annual gathering of the Sarcoma community since the first event in Seattle in 2005.
​
Hello! I am Elana Emlen, and I’m a new board member. I got involved with Northwest Sarcoma Foundation in 2020, when many of us were isolating at home. I wanted to find a way to support people impacted by Sarcoma, and NWSF invited me to help with the care package program and support chat groups. NWSF is a community; the opposite of isolation. In addition to the chat group, I have also Zoomed in for the Researcher Update Nights, where I learn so much about the promising work being done in our region to fight this cancer.
Intro by board member, Jeff Sweeney:
I am so proud of our successful operations and growth over our 25 years, which is a great tribute to all of us. Finally, I am very thankful for our immediate NWSF core team (employees and board members), as well as our volunteers, and constituents for your hard work, commitment, and dedication to our foundation’s mission, values, and programs. A heartfelt thank you to each of you!
Intro by board member, Ashley Glover:
I don't know about you but with the Spring season in full swing, my schedule has gotten busy! Two kids in Spring sports, work, and my duties as a board member it's easy to feel overwhelmed. I often fell tapped out and that I couldn't possibly have anything left to give. It's so easy to think like this but then I remember this Tanzanian proverb, "little by little, a little becomes A LOT."
I will continue to be a part of this organization by not only keeping up the accounting and administrative side of things but by also building relationships that I hope are lifelong. The rest of the team I work with is a Class Act and we want to thank all of you for your involvement no matter what that looks like. I look forward to a world without Sarcoma!
The foundation's main goal when I started was to build our donor management system and clean up
hundreds of spreadsheets and thousands of rows of data. By doing this, we've been able to clearly see who
our donors are. This was no easy feat, but with the support of the foundation and the team, I was able to get it
done.
I have been gifted the opportunity to meet people in their time of need and find ways to provide support. Though not all outcomes go as we hope, I continue to be inspired by patients' and caregivers' stories of resilience, love, and community.
This year do not be surprised if you receive a phone call, text, or email from a volunteer, board member, or myself! We are trying to connect with you, to learn more about you, and how we can further our relationship with YOU! I look forward to the opportunity to meet you in person, hopefully throughout the year.
We are excited to be the recipients of the M.J. Murdock Charitable Trust grant. This three year grant will allow us to hire a development coordinator and purchase the Classy Platform. With a new teammate and CRM, we will be able to maintain a donor database in one location, while providing a user friendly experience for donations and event registration. All of this will help us better serve Sarcoma patients and families in the Pacific Northwest.
