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In Conversation: Ian Slepian, Affiliate Volunteer, Maryland Affiliate
Maryland volunteer Ian Slepian spoke with Community Engagement Coordinator Paula Mukherjee about his passion for advocacy and relationships with fellow volunteers. This interview has been edited for clarity and length.
Paula: How did you first find PanCAN?
Ian: A dear friend had pancreatic cancer over 10 years ago, and her husband was a photographer for some of the PanCAN PurpleStride events, so I sort of knew about it. My wife, Beth, got diagnosed in 2016; after things stabilized, we went to a volunteer meet and greet. That's how we started getting involved.
My wife was also a volunteer. She was a social worker and retired due to the unpredictable side effects of chemo. After she retired, she informally counseled and supported other pancreatic cancer patients.
I try to help patients navigate the different specialists and the clinical trial process, which is very opaque. PanCAN is helpful in that regard because they send you a personalized list of trials in layman's terms, which is helpful. Getting into the trials is a bit of luck and art. I try to help people with that.
We began our advocacy work in 2019. During the summer of 2021, Beth was in a clinical trial at the National Institutes of Health (NIH) and getting treatment in the hospital at the NIH. She was able to do some of the advocacy actions from her hospital bed there. Somehow PanCAN President and CEO Julie Fleshman found out about that and gave a shout-out in a meeting to us.
We began fundraising for PurpleStride around 2018 and have been among the top three fundraising teams for the past several years. Beth passed away on April 29, 2022, a day before PurpleStride 2022, for which we were the top fundraisers. Julie actually left me a phone message when my wife passed away. I still have that.
Paula: What keeps you motivated as a volunteer?
Ian: We are making progress. The relative five-year survival rate is up to 12%, but there's such a long way to go. Pancreatic cancer is very difficult to diagnose early. It's an unusually tough cancer.
I want to continue the progress. The more you do, the easier it is to do. Initially advocacy can be scary, but when you've done a few meetings, it's not that bad.
Paula: Can you expand on that?
Ian: It can be a little daunting to contact people in Washington. I'm sort of an introverted person, but after doing it a couple times, it’s more familiar.
Paula: Why is advocacy important to you?
Ian: My wife was diagnosed with metastatic pancreatic cancer. I could see that there was progress since our friend was diagnosed in the late 2000s, but it was incremental. I do everything that can be done to help get more funding for pancreatic cancer, as well as for cancer in general, which are usually our advocacy asks.
Pancreatic cancer is the third leading cause of cancer deaths. More people die of pancreatic cancer than breast cancer every year, but there are many more people that have breast cancer. There's been so many more advances in that field and the survival rate is much better.
I just want to do what I can to move the situation along for pancreatic cancer.
Paula: Why do you think it's important for our advocates to stay engaged throughout the year?
Ian: It's not a “one-hit wonder” where you can just talk to the representative’s people or the senator's people and get their agreement. They need continued support. You want to let them know that you're still involved and remind them that this is important to us.
Paula: It sounds like advocacy is a team effort with your Affiliate, and that's been an effective strategy. What's the process?
Ian: Usually Advocacy Chair Susan Okula will say, “Ian, you're in this congressional district. Can you lead a meeting for this member of Congress with some other people in your district?” She's been a big help – a mentor for me.
Susan or PanCAN provides me with a contact in my senator or representative’s office. Usually there are one or two people I know in my district who would care about this, but Susan would have the resources to know other PanCAN advocates in my district, and then I could ask them if they wanted to come along.
Paula: Why should others in the pancreatic cancer community consider volunteering for PanCAN?
Ian: For the same reasons I did. There's not only the things that we do to help us support advocacy, but also to support PanCAN Patient Services, which provides patients free, one-on-one support with clinical trial information and other resources. You also have Know Your Tumor®, PanCAN’s precision medicine service.
There's also a lot of camaraderie with other volunteers. We're all trying to do the same thing. People really cooperate with each other and look out for each other.
Please feel free to contact Ian Slepian (ianastro2@gmail.com) or Paula Mukherjee (pmukherjee@pancan.org) with any questions.
Ian and Beth in 2021.
Paula: How did you first find PanCAN?
Ian: A dear friend had pancreatic cancer over 10 years ago, and her husband was a photographer for some of the PanCAN PurpleStride events, so I sort of knew about it. My wife, Beth, got diagnosed in 2016; after things stabilized, we went to a volunteer meet and greet. That's how we started getting involved.
My wife was also a volunteer. She was a social worker and retired due to the unpredictable side effects of chemo. After she retired, she informally counseled and supported other pancreatic cancer patients.
I try to help patients navigate the different specialists and the clinical trial process, which is very opaque. PanCAN is helpful in that regard because they send you a personalized list of trials in layman's terms, which is helpful. Getting into the trials is a bit of luck and art. I try to help people with that.
We began our advocacy work in 2019. During the summer of 2021, Beth was in a clinical trial at the National Institutes of Health (NIH) and getting treatment in the hospital at the NIH. She was able to do some of the advocacy actions from her hospital bed there. Somehow PanCAN President and CEO Julie Fleshman found out about that and gave a shout-out in a meeting to us.
We began fundraising for PurpleStride around 2018 and have been among the top three fundraising teams for the past several years. Beth passed away on April 29, 2022, a day before PurpleStride 2022, for which we were the top fundraisers. Julie actually left me a phone message when my wife passed away. I still have that.
Paula: What keeps you motivated as a volunteer?
Ian: We are making progress. The relative five-year survival rate is up to 12%, but there's such a long way to go. Pancreatic cancer is very difficult to diagnose early. It's an unusually tough cancer.
I want to continue the progress. The more you do, the easier it is to do. Initially advocacy can be scary, but when you've done a few meetings, it's not that bad.
Paula: Can you expand on that?
Ian: It can be a little daunting to contact people in Washington. I'm sort of an introverted person, but after doing it a couple times, it’s more familiar.
Paula: Why is advocacy important to you?
Ian: My wife was diagnosed with metastatic pancreatic cancer. I could see that there was progress since our friend was diagnosed in the late 2000s, but it was incremental. I do everything that can be done to help get more funding for pancreatic cancer, as well as for cancer in general, which are usually our advocacy asks.
Pancreatic cancer is the third leading cause of cancer deaths. More people die of pancreatic cancer than breast cancer every year, but there are many more people that have breast cancer. There's been so many more advances in that field and the survival rate is much better.
I just want to do what I can to move the situation along for pancreatic cancer.
Paula: Why do you think it's important for our advocates to stay engaged throughout the year?
Ian: It's not a “one-hit wonder” where you can just talk to the representative’s people or the senator's people and get their agreement. They need continued support. You want to let them know that you're still involved and remind them that this is important to us.
Paula: It sounds like advocacy is a team effort with your Affiliate, and that's been an effective strategy. What's the process?
Ian: Usually Advocacy Chair Susan Okula will say, “Ian, you're in this congressional district. Can you lead a meeting for this member of Congress with some other people in your district?” She's been a big help – a mentor for me.
Susan or PanCAN provides me with a contact in my senator or representative’s office. Usually there are one or two people I know in my district who would care about this, but Susan would have the resources to know other PanCAN advocates in my district, and then I could ask them if they wanted to come along.
Paula: Why should others in the pancreatic cancer community consider volunteering for PanCAN?
Ian: For the same reasons I did. There's not only the things that we do to help us support advocacy, but also to support PanCAN Patient Services, which provides patients free, one-on-one support with clinical trial information and other resources. You also have Know Your Tumor®, PanCAN’s precision medicine service.
There's also a lot of camaraderie with other volunteers. We're all trying to do the same thing. People really cooperate with each other and look out for each other.
Please feel free to contact Ian Slepian (ianastro2@gmail.com) or Paula Mukherjee (pmukherjee@pancan.org) with any questions.
Ian and Beth in 2021.
