Big news, I’ve joined the Board of Directors for the Cutaneous Lymphoma Foundation, and in this episode, I’m sharing why that matters and what it means for patients like us. I talk abou twhy having actual patients at the table where decisions are made is critical, and how this foundation how been fighting for us since the 1990s, thanks to trailblazers like Judy Jones and Judith Shea.

I dig into what the foundation really does—connecting people to specialists who understand this rare disease, hosting educational events that actually help, and going to bta for lifesaving medications. We’re also pushig for more research funding, helping patients find clinical trials, and working alongside other groups to create change.

I've Joined the Cutaneous Lymphoma Foundation Board – Ep. 17 – The Fine, But Not Fine Podcast

Big news, I've joined the Board of Directors for the Cutaneous Lymphoma Foundation, and in this episode, I'm sharing why that matters and what it means for patients like us. I talk abou twhy having actual patients at the table where decisions are made is critical, and how this foundation how been fighting for us since the 1990s, thanks to trailblazers like Judy Jones and Judith Shea. I dig into what the foundation really does—connecting people to specialists who understand this rare disease, hosting educational events that actually help, and going to bta for lifesaving medications. We're also pushig for more research funding, helping patients find clinical trials, and working alongside other groups to create change.

Transcript

You look fine, but you’re not fine, and that’s exactly what we’re here to talk about. Welcome to Fine, But Not Fine, the podcast about navigating rare disease, health care battles, and the messy reality of chronic illness. I’m Kelly Paul, and I’ve been living with Mycosis Fungoides since 2015. This is a space for real talk, real experiences and practical advice, because surviving is one thing, but figuring out how to actually live, that’s the hard part.

Big News: I Joined the CLF Board

Hey everyone, and welcome back. I have something personal and exciting I want to share today, and it’s that I have joined the board of directors for the Cutaneous Lymphoma Foundation. And I want to talk about why I wanted this, why I applied for it, and why it matters so much for people like you and me.

Why This Matters to Me

Now, I wasn’t asked to do this. I applied, I interviewed, and I was selected. And I’m I’m not saying that to toot my own horn, but because it means something to me that patients, real patients, get to have a seat at the table where decisions are being made. And I’m also not alone. There are two new board members who came on at the same time, each bringing their own skills, perspectives and a passion for making life better for people with this rare disease.

Where it All Started: A Foundation Built by Patients

And the Cutaneous Lymphoma Foundation wasn’t founded by institutions. It was actually born from patient needs. So I’m going to give you a little bit of history here, and it’s, you know, hopefully I’ve got all my information correct here for you.

I think it was around 1990 a woman named Judy Jones was diagnosed with Cutaneous Lymphoma, and really struggled to find anyone else with a disease or to get reliable information about it. I think it was around 1996 she started a listserv, you know, something you could go on…and basically it’s an email based communication system that allows a group of people to communicate with each other. And this was way before we had other online options. I mean, this is the 90s guys.

How the CLF Took Shape

And around this same time, another woman, Judith, Shea, lost her husband, Lee Allen Cohen Sezary Syndrome. She also found a lack of resources and community and founded a memorial fund to fill that gap.

And it was, I think, the late 90s, maybe 1998 Dermatologist, Dr Stuart Lissen, moved by the grassroots patient movement and patient frustration, actually convinced the two Judies to formalize their efforts. And with support at the American Academy of Dermatology and seed money from the Cohen fund, the Mycosis Fungoides Foundation was formed.

And in 2005 the foundation broadened its scope and changed its name to the Cutaneous Lymphoma Foundation to support patients with all types of cutaneous lymphoma.

A Mission That Hits Close to Home

So this wasn’t a foundation that was built in a boardroom. It grew from real people like us who said we deserve better.

Why This Work is So Critical

So what makes this work so important? Well, cutaneous lymphoma is rare and complex. It can show up in a lot of ways, and it’s not very straightforward to diagnose or treat. Many patients with cutaneous lymphoma have seen more doctors across a variety of specialties than I think I can count. And the foundation connects these specialists, not just the ones who sort of know about it, but the ones who specialize in it, so that knowledge is shared and better treatments get to patients faster and to guide this work. The foundation has a Medical Advisory Council of experts and leaders in cutaneous lymphoma who volunteer their time in support of patient program and service initiatives.

Bringing Patients Together

So how do they bring patients together? Now, when I was first diagnosed, I was really looking for more than textbook answers, and the Cutaneous Lymphoma Foundation does this well. In addition to that old listserv, they have a Facebook group. They host patient education events, patient support groups, and conferences where you’re not just a chart or that weird diagnosis from medical school that we often hear from doctors, you’re a person talking to another person who knows what it feels like to sit in the waiting room, to worry about scans, to juggle your treatments, or fight with insurance for what you need to address your disease.

Why Advocacy Matters

So a huge part of what the foundation does, and why I wanted to be on the board, is that it advocates for us. Patients like me, you, the person you care for. Okay?
They work work really, to make sure medications we rely on don’t get discontinued because they’re unprofitable. You know, so many of the medications we use, what’s the phrase? It’s off label, right? It wasn’t made for us, our disease, but it works for us, and without someone fighting for those drugs, they could disappear, reducing our treatment options.

A Personal Example: Pegasys Interferon

And Pegasys Interferon happens to be one of those medications. I know about it because I’m on it, but it’s only now made one place in the world, and it almost didn’t happen, because its primary purpose is for hepatitis. And other better drugs came along for hepatitis, it was like, we don’t need this Pegasys, but the advocates with the Cutaneous Lymphoma Foundation and medical practitioners treating cutaneous lymphoma were like, “hey, wait!” to the drug company. You can’t just get rid of this. I mean, that’s critical work for those of us with rare disease.

They Push for What Matters

They push for more research funding, because rare disease research doesn’t happen by accident. It needs noise, it needs attention, it needs real patients saying we exist and we deserve some better options.

They also bring doctors and researchers together so breakthroughs don’t sit in a silo, but they actually make it out to the people who need them.

They work with partner organizations to advocate on behalf of cutaneous lymphoma patients by participating in days where we can visit Congress and share our stories. It’s a there’s a rare disease organization that they work with, and I wanted to go last year. Didn’t happen. I’m certainly putting it on my list for this next year.

Connecting Patients to Clinical Trials

And they work with researchers and us, the patients, to get us connected to clinical trials. If you’re, you know, doing research for rare disease. How do you reach the people with the rare disease when you if you don’t know where to find them? Right? So that’s something really valuable that the foundation does, and that’s critical to all of us as we look for better treatment options and ultimately look for cures.

Why I Stepped Up

So why did I want this role? Well, I wanted it because I believe patients need to be at the table, not just talked about, and that is a foundational element of the Cutaneous Lymphoma Foundation, patients. I wanted this because I know what it feels like to have more questions than answers, and I know how powerful it is when you find real, relatable information and people who’ve walked your road.

It’s More Than a Website

The foundation has a website, yes, but it’s more than that. It is people coming together to make sure no one does this alone, and now I get to be a part of that in a bigger way.

How You Can Get Involved

So how can you connect? If you have never checked out the Cutaneous Lymphoma Foundation, please do. It’s clfoundation.org. Attend a patient event, read up on the research that they help make possible. Listen to their podcast. It’s called Coffee and Community. Share your story. You never know how much you could help someone else, because they need to hear your story.

You Don’t Need to Be on the Board to Make a Difference

And if you feel called, get involved. You don’t have to be on the board to make a difference. You can volunteer, you can donate. You can get on their email list so you know what’s going on in the cutaneous lymphoma world. Join their Facebook group, or just tell another patient they’re not alone, and connect that other patient to it. This is where the change starts.

Why This Role Matters to Me

So that’s my big news and my big why. And I’m really proud to bring my voice, my experiences and your stories to this work. We’re stronger when we show up for each other.

I’ll see you next time on Fine, But Not Fine.

Thanks for listening to fine, but not fine. If this episode resonated with you, subscribe so you don’t miss what’s next. And if you got a story question or just need to vent, reach out. I’d love to hear from you until next time, take care and keep on going.