Joe McNeill on Expanding Sarcoma Support and Future Goals | Sarcoma Talks

Shushan Hovsepyan: Hello everyone and welcome to today’s interview Sarcoma Talks. I’m Shushan Josepian, your host as always, and today we have the honor of speaking with Joe McNeil, who is the Executive Director of the Northwest Sarcoma Foundation.

Hello Joe and thank you for accepting our invitation. Good morning and thank you very much for offering. We’re happy to be here.

Pleasure is all ours and let’s learn more about her journey, the foundation’s mission, and the impactful work that they are doing. So let’s start from the beginning. Can you share more about your journey and the background that led you to become the Executive Director of the Northwest Sarcoma Foundation?

Joe McNeill: Sure, so I started as a fundraiser for a long distance walk for another organization, cancer organization, and during the event I thought I could do this, I could produce something like this, and then a very, an opportunity presented itself and it gave me the chance to learn. After a few years of working for various non-profit organizations from large national to smaller community local types, I decided I wanted to be an Executive Director for a small non-profit organization with a mission that I could get behind.

I took the steps to get some further education as an Executive Director, and during the schooling we did an exercise that focused our interests, which led me to focus on two areas, health or cat and dog welfare, and then I used my mantra of finding a smaller non-profit as I searched for the right fit.

Being so focused on a smaller organization it took a while, but I did feel like I found the right organization. I’ve been here for just about four and a half years.

Shushan Hovsepyan: Oh, that’s interesting to hear, and can you share the history and mission of the foundation? What inspired its creation?

Joe McNeill: Yeah, the organization started from a gift in about 1995 from a gentleman who had lost his wife and mother to their, I think, three children, young children at the time, and the gift was dedicated to helping others through their sarcoma journey. Dr. Ernest Conrad III was their physician who helped the family during their journey, and he was tasked with starting the organization. Using his connections from years of work with sarcoma patients in the area, he and a few others started the process of forming the non-profit organization, which formalized in April of 1996.

The Northwest Sarcoma Foundation is a local organization, keeping it regional, so we’re Washington, Oregon, Alaska, Idaho, and Montana is our focus, but we’re also the oldest sarcoma organization in the U.S. I think the national organization is about six months behind us. Not much, not much. We get to keep that title, and then obviously when it was formed, they said establishing it and keeping it as a local.

Their original purpose was to establish a place of support and education for those living with sarcoma or other rare bone tumor diseases in our region, and that has now obviously the focus in the mission has been better defined, and now it’s to provide hope, education, and support to anyone affected by sarcoma in the Pacific Northwest while investing in research to improve cure rates for sarcomas.

Shushan Hovsepyan: Wonderful, and what are those key projects that the foundation offers to sarcoma community right now?

Joe McNeill: Yeah, the oldest and largest program is our HELPS financial assistance grant programs, which over time has evolved to the Bob Ortblatt HELPS grants and the Jenna Westerholm Pediatric HELPS grant program. The program hopes to alleviate some financial burdens to individuals and families while going through treatment. In 2016, there was a study done, I believe through the help of the Knight Cancer Institute, I think, or something, they have a community grant program.

Study was done. Study determined just two biggest challenges for sarcoma patients is financial burden and feelings of isolation. We were early adopters to providing help for the financial burden side of things, and we’ve created other programs to address and support the challenges of isolation.

Over the years, there have been various types of meet and greets, but during the pandemic, it was particularly challenging. With the help of a volunteer who had lost her husband just prior to the world shutdown, we created our casual chat online support program. We had groups for adult patients and survivors, caregivers, we had a teen group, and then we had one for those who had lost someone to sarcoma.

Again, with further changes in the world and learning what works and doesn’t work, the program currently stands with two of our chat groups still existing online. One is for, obviously, the patients and survivors, and the other for caregivers. We like to joke that we’re global, being that we had a woman from Russia who had joined us for the patient and survivor group one time.

I think it was, yeah, our caregiver group. She lost her brother, I believe it was, but so we joke that we’re global in that way. But we’ve found other ways to connect in person.

The other two groups have found ways to connect in person, so we don’t have that online presence anymore. We learned that we’re not experts at teens and things like that. The same volunteer also helped us relaunch and evolve an older program that had been lost over time, and it’s care package program.

We provide care packages to patients in treatment, which items include things that will help them during treatment, blankets, water bottles, things like that. Plus, we have a care package that we send to those that have lost somebody to sarcoma. That was a passion part of that for that one volunteer.

She helped launch that with her mind and her finances. It was an excellent pairing. We’re also excited that over the last few years, we’ve been able to bring back some other programs that were delayed due to the pandemic.

We have the Dragon’s Leader Pediatric Fun Days in local pediatric treatment centers. We do periodically and bring fun and games to the kids. Plus, the Community Fun Days, which provides an experience for patients and survivors and their family members to do something they may not have been able to do or financially afford.

It brings them together as a community, so they understand they do have a sarcoma community. As always, we focus everything to ensure that no one faces sarcoma alone while keeping our program’s mission focused.

Shushan Hovsepyan: That’s really wonderful, the work that you are doing, especially the chatting was really interesting. It’s very inspiring. You mentioned a lot of projects, but I imagine that there have been one or some of them that were the most significant achievements for yourself personally under your leadership.

Could you mention that?

Joe McNeill: Under my leadership, we received a very large grant, which allowed us to hire an additional staff person and purchase and formalize a donor relationship tool. These have been game changers for us. As I mentioned earlier, it certainly allowed us to expand our programs and made us a more robust organization in supporting our sarcoma patients.

It’s been that key focus. Everybody wants to think they’ve had some big, big, big, big thing, but I do have to say that that grant was a game changer for the organization in allowing us to better understand our donors and help them, which then allows us to expand and help our patients.

Shushan Hovsepyan: Yeah, that’s nice to hear. You mentioned about the challenges during the pandemic, but what are the biggest challenges the foundation faces in supporting sarcoma patients and how particularly you are addressing these challenges?

Joe McNeill: Obviously, I mentioned the financial burden, isolation. We’ve been addressing those, obviously, for a long time, but it’s always in the forefront of our programs that we create and ensure that we address those two challenges first and foremost. Another is research.

With the government going back and forth about how they support cancer research, small organizations have really had to step up. We started funding research grants in 2012 and have continued to support research since, although many of the other sarcoma organizations, that’s their main focus. It isn’t our dedicated focus, but it’s still part of our mission and we will continue for a long time.

Sarcoma research is widely underfunded and we hope to alleviate some of that as much as we possibly can. I think for us, that’s a challenge. We try to make sure that every year we’re providing some sort of support and we do focus that even on our own region too.

Although we open it up nationally and globally, but we do try to focus a lot on the research that’s happening in our area. We’re lucky enough to have two sarcoma centers of excellence in our area.

Shushan Hovsepyan: Yeah, that’s wonderful. What are the long-term goals of the foundation and what initiatives you are mostly excited about?

Joe McNeill: Sure. We have two things that I like to call the big, hairy, audacious goals, so the BHAGs. We’d like to obviously increase the financial amounts we provide to help our patient grants.

Right now, we’ve had to reduce that amount over time through the pandemic and we brought it back, but we’d like to make it more because we know the financial burden that patients are facing is more just with inflation. Then at some point, we want to add a bereavement grant to help families with the financial burden that comes with losing someone to sarcoma because after you’ve been through all the treatment and paid for all that, sometimes then you have to pay for the next thing and it’s hard. It’s very hard.

We do have those two big things that are on our list of goals for the future for the organization.

Shushan Hovsepyan: It’s challenging but also interesting. Can you share a memorable experience or story from your time with foundation that had a profound impact on you?

Joe McNeill: Sure. When we did have the teen group, there was a young lady who was 19. She was a freshman in college and she was one of the volunteer leads for the teen group.

She was sharing some of her personal story and I had realization that at such a young age, she on a completely independent level had to make the decision that was something I couldn’t even fathom making as an adult. She had had to make the decision at 19 to amputate her leg. It was not her parents that made that decision, she made that decision.

She had to grow up very fast and it broke my heart a little that she had to make a life-altering decision at an incredibly young age. She’s now in her mid-20s, I think. She was even participating in pre-Paralympic groups and things like that.

She was getting involved in that type of stuff. She was embracing it well.

Shushan Hovsepyan: It’s a touching story and working with pediatric patients especially, we always encounter such kind of situations and it’s sad but hopefully the sarcoma research is improving and we’ll find someday the best cure for our patients. In your opinion, what qualities are essential for effective leadership in a non-profit organization?

Joe McNeill: Oh, allowing people to help. A lot of non-profit leaders are with called type A. We feel like we have to do it all ourselves.

I really find that allowing people to help either your staff, your volunteers, your board, whatever that is. When people say they want to help an organization, you usually mean it. Finding ways to release that tight grip that we all seem to have on things and allow them to help do it for the organization.

I really try to make that part of my mantra of allowing people to do other things for us.

Shushan Hovsepyan: That’s a really good point because when you have a good team everything, every challenge is possible to overcome. Let’s switch a little bit to your personal life. How do you balance your personal responsibilities with personal interests?

I know that you have some interest in traveling, camping and crafting. How do you find that balance?

Joe McNeill: I do set my boundaries for time at work. I do whatever is necessary to ensure that the organization functions smoothly. There are certainly days that are longer like with our upcoming dragon slayer walks in four cities.

Those are long days during, after and for our whole team. I also tell them to relax and recoup the days in between and afterwards as long as our patients are supported. Their families are communicated with in a timely manner.

It’s really setting boundaries and setting up time to do things. I know and my staff and my board know that August, I go camping every year with my brothers. There’s the third weekend in August.

I’m out there camping with my brothers. Then I have a small side crafting business that come November, I’m at craft fairs on the weekends. I just have to communicate that well to my volunteers, my staff, my board.

It’s been successful so far. I haven’t had too many spinning plates fall and crash to the floor, but sometimes they’re always inevitable.

Shushan Hovsepyan: That’s wonderful. Also, I guess next week you are going for camping.

Joe McNeill: I am. It is exactly that. I go camping with my brothers.

Sadly, I lost my mom to a rare cancer. My dad has also passed away. This is the opportunity for my brothers and I to get together and make sure we see each other at least once a year.

They are local, but they’re all busy people. I will be out in the woods in about a week. Okay.

Shushan Hovsepyan: Thank you. Let’s wrap up our interview. Thank you so much for sharing your insights and experience with us today.

It’s been truly inspiring to learn about the incredible work that you are doing for sarcoma patients and sarcoma community. I wish you continued success in your mission. Thanks for being here today.

We’ll keep in touch. Thank you for having us.

Joe McNeill: Truly appreciate it. If anybody needs to check us out, they know to find us online at NorthwestSarcoma.org. Appreciate it.

Thank you so much for having us. Thank you. Bye.

All right. Bye.

Previous episodes of  5 min Sarcoma Talk with Shushan Hovsepyan

Episode 1: Leo Kager

Episode 2: Rajkumar Venkatramani

Episode 3: Aaron Weiss

Episode 4: Leo Mascarenhas

Episode 5: Andrea Ferrari

Episode 6: Sandra D’Angelo

Episode 7: Roger Wilson