Steven Taylor, President & CEO of the Sjogren’s Syndrome Foundation

Lupe & Brian talk with Steven Taylor, President and Chief Executive Officer of the Sjogren’s Syndrome Foundation, (SSF).
We discuss some of the foundation’s accomplishments and what they are currently working on to benefit all who are suffering from Sjogren’s Syndrome.

Lupe & Brian:     Welcome to another episode of Sjogren’s Strong.

Brian:    This is Brian.

Lupe:     And this is Lupe.

Brian:    And this is your weekly podcast discussing how to live an active and healthy lifestyle despite a diagnosis of Sjogren’s Syndrome.

Lupe:     We are so excited to welcome Steven Taylor of the Sjogren’s Syndrome Foundation to our show. We had the pleasure of meeting Steve last year at the 2018 L.A. Walk for Sjogren’s, and we’re thankful to have him on the show to learn more about what the Sjogren Syndrome Foundation is doing.

Lupe:     But before we get to that, let’s learn a little bit more about Steve, Brian.


Brian:    Steven Taylor is the President and Chief Executive Officer of the Sjogren’s Syndrome Foundation, SSF. Since joining the foundation in 2003 Steve has focused on making Sjogren’s a household name and ensuring that Sjogren’s patients receive a prompt diagnosis and proper care for their disease.

Brian:    Steve’s primary focus over the past 10 years has been on increasing the foundation’s income resources while energizing patients and their families.

Brian:    Steve and his staff have been able to launch such initiatives as the development of the first-ever clinical practice guidelines for Sjogren’s, which gives physicians a roadmap on how to treat, manage and monitor their patients.

Brian:    In addition, the SSF has also launched an international clinical trials consortium with a goal of getting a treatment developed for Sjogren’s. In 2012 the SSF launched their largest awareness initiative ever in the support of the goal to shorten the time to diagnosis of Sjogren’s by 50% in five years.

Brian:    When launched, it took nearly six years to receive a proper diagnosis of Sjogren’s and at the end of 2017, the SSF announced that it exceeded its goal and it now takes 2.8 years to be diagnosed.

Brian:    In 2019, Steve was named chair of the board of directors for the National Health Council, NHC, a nonprofit association of health organizations. Its members are national health-related organizations including leading patient advocacy groups such as the American Cancer Society, the Arthritis Foundation, and the American Diabetes Association.

Brian:    The NHC focuses on changing the landscape of healthcare delivery, research and therapy development. Steve is proud of his leadership role with the NHC, as it places Sjogren’s alongside more well-known diseases, helping to expand the credibility of Sjogren’s.

Brian:    Prior to joining the foundation, Steve was with the American Heart Association for over eight years and he started his career with the American cancer society.

Brian:    Steve has a Bachelor’s degree in political science from Boston University and received his Executive MBA from Auburn University in May of 2013. He resides in northern Virginia and is a proud father of three sons, Jack Owen and Austin.

Brian:    Welcome Steve.

Lupe:     Stephen, thank you for coming on the show. How are you today?

Brian:    I’m very good. Thanks for having me guys.

Lupe:     We’re excited.

Brian:    We are super excited to have you with us here. We’ve outlined a couple of questions for you and I first want to start off by talking about the clinical practice guidelines that you were instrumental in getting out.

Brian:    How well, I guess we should start off with, can you explain what they are and how well are they being received by the medical professional?

Steve:   Sure, well absolutely. And first of all, thanks for having me today. You know, I’m excited to talk about the advancements that we’re making for Sjogren’s patients and I’m hoping we can cover a wide range of topics today in the time that we have.

Steve:   But a very important project at the Sjogren’s Syndrome Foundation took on a couple of years ago, was developing the first-ever clinical practice guidelines for the treatment of Sjogren’s.

Steve:   As some of your listeners probably know, there’s never been guidelines for Sjogren’s, but many other diseases have guidelines, for example, hypertension, Lupus, Rheumatoid Arthritis, Diabetes, et cetera.

Steve:   And what clinical practice guidelines are, are roadmaps for physicians, treating physicians to use as a guide, for what they should be doing with a patient, to help manage and monitor and treat the patient with their disease.

Steve:   With our disease, as you all know, Sjogren’s is very complex and there’s so many various issues with the disease that we have to break down our guidelines into the various manifestations of the disease.

Steve:   What typical great guidelines are, are peer-reviewed guidelines, have been voted on by peers in certain specialties, to agree to the guidelines that we’re suggesting.

Steve:   Not very many patient organizations take on this challenge because it involves hundreds of clinicians, that you need to recruit to help write the guidelines and then many to help vote on them so that you have a consensus to what we’ve decided is the guideline.

Steve:   If you do this process correctly, it’s called a Delphi consensus model. It can then be peer published in peer-reviewed journals, trade association journals for specialties like rheumatologists, dentists, ophthalmologists, optometrists, neurologists, oncologists, et cetera.

Steve:   So, if you do the right process and use a Delphi consensus model and you have certain methodology done to your guidelines and how you came up with your decisions, you then can get peer-reviewed. And then they’re looked at very highly and highly regarded in the medical community.

Steve:   So, our guidelines, we followed all those, uh, policies and procedures as we started our guidelines program a couple of years ago. Um, and our first three guidelines out of the gate in rheumatology specifically were uh, how to treat fatigue, inflammatory, musculoskeletal pain and then, um, the use of biologics to treat the disease.

Steve:   Um, those were the first three weeks tackled. We had a committee for each different category, of about eight to 10 rheumatologists to help write the guidelines. And then we went out, as I mentioned, out to 75 rheumatologists help vote on those guidelines.

Steve:   In addition, the same time, we started dry eye guidelines, as well as dental caries prevention, how to prevent dental tooth decay basically, um, in patients. And those guidelines were also written by dentist and, or eye care providers, between the two different guidelines and then voted on by their peers, as well.

Steve:   All five of those have been peer published and reviewed and endorsed by different trade associations, for doctors. Um, and they’re available on Sjogren’, on our website for people to download and bring to their doctors. And they’ve been highly regarded, in regards to what the doctors think of them because of the peer-review process. Um, I think if a patient organization just came out with guidelines and said, so-and-so should do this, doctors wouldn’t listen to it, as well.

Steve:   So, to have um, physicians peer groups, write them and endorse them, along with the patient voice and the patients view from our organization was even more spectacular, because we are able to make sure the patient’s voice were heard in the guidelines, while using the doctors and their credibility to come across strong in the community. We’ve now moved on to additional guidelines, which we’re very excited about.

Steve:   We are getting close to publishing the pulmonary guidelines on what to do for lung complications, with the disease. Um, something that we don’t talk a lot about, but people need to be aware of, the serious lung complications that can be life-threatening or just life challenging, for our patients.

Steve:   Such things as pneumonias and bronchitis is, ah, interstitial lung disease. So, those guidelines are getting closer. And then we’re working on vasculitis guidelines, lymphoma guidelines and two different types of neuropathy guidelines and cognitive functioning guidelines, in regards to how the disease is affecting cognitive functioning.

Steve:   So, we’re really excited about the new sets of guidelines because they’re going to really delve into some of the areas that are very important to our patients because doctors need to know how to watch for them. And what’s interesting about those new guidelines is that we are able to involve specialists that treat those various area.

Steve:   So, for example, our pulmonary guidelines has 50% of rheumatologists on the committee to write them along the 50% pulmonologists. Um, and they’re able to share their best practices from both the pulmonary clinic and, or the rheumatology side, um, and come together on these guidelines.

Steve:   So, rheumatologists will know what to refer out to a pulmonologist and a pulmonologist will know when to involve rheumatologists, if they see a patient that hasn’t been diagnosed yet, with Sjogren’s. So ah, and the same with lymphoma, oncologists are involved along with rheumatologists.

Steve:   So, very excited about it. And it really is a game-changer for Sjogren’s patient’s long term.

Brian:    You know, it is, and I hope that they truly appreciate the work and the effort that it takes to accomplish something like this. And it’s, it’s on their behalf. And everybody that’s going to follow along with a diagnosis of Sjogren’s. So that’s, that’s awesome, awesome work.

Steve:   Thank you.

Brian:    I want to move into the international clinical trials consortium. And this is the first, and I’m guessing only international consortium when it comes to clinical trials for Sjogren’s drugs.

Steve:   That is correct.

Brian:    And is there anything you can share with us about drugs that are currently in this pipeline for trials?

Steve:   Absolutely. So I’ll back up a little bit I could’ve done this before, the discussion around clinical practice guidelines, but you know, at the Sjogren’s Syndrome Foundation, we have kind of a three-pronged approach to how we look at how treatment for patients is vital to what we’re doing.

Steve:   First, is getting patients diagnosed correctly. And we worked as you know, um, on increasing the time and speed to diagnose Sjogren’s and we’ll probably talk about those a little bit later.

Steve:   But we knew once they were diagnosed, we needed to have a treatment plan for them. And that’s what clinical practice guidelines does. The current treatment roadmap with what’s available currently on the market.

Steve:   At the same time, we know we need to be working in advancing what’s available for patients, to treat them, because we know we don’t have a drug for Sjogren’s.

Steve:   So, at the same time we been writing critical practice guidelines, we’ve been working on the clinical trials consortium, which is an area focused on helping speed up, as fast as we can, the development of a therapeutic to treat the entire disease.

Steve:   It’s not a symptomatic relief, so it’s not another dry eye drug or another dry mouth drug. It’s asymptomatic relief for all of the symptoms, for the whole disease.

Steve:   So, we kind of have that three-prong approach. And so now, very important and vital over the next 5-10 years, is figuring out how we can get a treatment on the market for Sjogren’s.

Steve:   So, this international clinical trials consortium has been around a couple of years now. It involves about 20 key opinion leaders and key opinion leaders or leaders in the field that treat the disease. So rheumatologists or researchers or sometimes a little bit of both, like they’re a researcher and a clinician. They treat patients that they do research on the side.

Steve:   We’ve recruited 20 of the top specialists in Sjogren’s to come together to serve on this committee. Along with, we’ve recruited currently 9 pharmaceutical companies that each consent, two representatives to serve on this consortium.

Steve:   We meet three times a year with the company’s representatives and the key opinion leaders, to see what best for the Sjogren’s Syndrome Foundation can do to speed along trials, but also to represent all of the organizations that are sitting around the table.

Steve:   So, what priorities should we do as an organization that’s going to help speed along clinical trials? So a few things have happened over the last few years since we started this consortium. First, we have more members, more corporate pharmaceutical companies coming on board because there’s such an interest in the disease space. They know there’s a need from the patients, that we need a drug on the market for the disease. And we have all the large pharmaceutical companies, pretty much interested in some type of pipeline to develop a therapeutic.

Steve:   From there, their one priority was for the Sjogren’s senior foundation to meet with the FDA. And we’ve done that already twice. We’re going to be doing another meeting this fall with the FDA, to make sure the FDA’s ready and able, uh, for when a drug company comes forward with a potential drug. And what we can do to help educate the FDA on the disease itself from a nonpartisan, if you will, group.

Steve:   So, can we bring our doctors in to make sure the people that are reviewing these drugs understand the disease? Can we bring in the patients to educate the FDA so they’re ready and they’re understanding what the drug could mean to a patient, rather than just hearing the results from the trial.

Steve:   And so we’re working with the FDA on that regard. Plus we’re working with the FDA on making sure that the pharmaceutical companies have some guidance on what they should be testing for in their drug.

Steve:   So, what they called clinical endpoints. What should the drug be improving? What will the FDA approve, as a drug, if they show x, y, z? And so we’ve been working with the FDA, and our meetings have very good discussions around what the FDA would be willing to approve.

Steve:   Is it just an increased, uh, to better fatigue? Is it around joint pain? Is it a multiple of things? Um, and so we’re working with the FDA, making sure the patient voice heard, but also we’re getting the information to make sure the companies know what is going to be the most, um, fastest way to get a drug on the market for our disease.

Steve:   In addition to that, we’ve done additional programs to help train clinical investigators who are doing these clinical trials. And training them on how to score the severity of a disease in a patient, so that all companies are scoring the same way.

Steve:   So, in the past, some companies score certain ways and other companies score a different way, based on who trained their investigators.

Steve:   So, the Sjogren’s Syndrome Foundation actually developed an online training portal to train all investigators the same way. Um, so that if you’re at one company or another company, you’re scoring the same exact way, no matter what company you’re working for. And when I say working for, that means a doctor in the field who is currently doing a clinical trial for xyz pharmaceutical company.

Steve:   So, we’ve worked on that as a major priority because they felt that that was a big area that was lacking, was standardization of training for clinical trial investigators.

Steve:   We also help with recruitment for patients, to make sure patients know about these clinical trials. And I think one of the really important things that we’ve done, which might sound trivial to some, is making sure that these clinical trials are in the right location. That they’re doing them in sites that actually have Sjogren’s patients, rather than just sites that the company might have known this doctor. And the doctor says, oh, I have Sjogren’s patients.

Steve:   Um, but they don’t really have the sick Sjogren’s patients. They don’t have the ones that stayed with them for years, because that doctor might’ve not cared about Sjogren’s, before.

Steve:   So, we’re directing these companies to go to doctors that have huge patient populations, that have shown, um, willingness and appreciation for the disease and that these doctors really care about the disease.

Steve:   Now they have to be able to do clinical trials. So that means they do have to have some difference in just the regular community rheumatologists. Not every rheumatologist does clinical trials in their sites. So we are limited in which rheumatologists we can refer, in that regard. But we want to make sure that these companies are choosing rheumatologist that really know the patient population and have the patient population. Because if we can fill these clinical trials faster, that means it shortens the time for how long a trials will take. So, we’re working on that.

Steve:   And in addition, we’ve worked on many other areas in clinical trials, in design of clinical trials. For example, what is a patient willing to go through to do a trial? Are they willing to drive two hours? Probably not. Are they willing to drive an hour? Probably.

Steve:   Do they need to go in every week for blood draws or can a company send someone to your home to do the blood draw every week, so that you only have to go to the doctors every two weeks with the clinical trial?

Steve:   Um, what other things, do you have to go off of your background medication? Can you stand your Plaquenil? Can you go off your Plaquenil? Can You keep taking Restasis, Evoxac, Salagen, Methotrexate, whatever it might be? What can you stand, what you can’t? And making sure the companies know how important and vital those things are to maintaining a person’s life.

Steve:   And some companies have been able to leave patients on their background medication while on the trial. Now, some can’t because their drug is first reasons they can’t stay on certain drugs. And that’s understandable.

Steve:   But some companies, because we’ve met with them and patients went with us to those meetings, they heard them and they went back. And one company in specific I know went back and realized very quickly, hey, we can leave patients on A, B and C. D they can’t be on, but A, B, and C.

Steve:   But originally before we went to meet with them, with our patients, they were going to make them go off A, B, C and D. Um, and because they heard what the patient said is, I can’t live without my x-drug, it will ruin my life. I could never do the trial because I need to have some baseline of normalcy before I entered the trial.

Steve:   And so they went back and figured out what they could do. So having the voice of the patient, involved with these pharmaceutical companies is critical because they need to hear what it’s like to live with the disease and what it’s like to be in a clinical trial and what you, the patient want in the end of the day to treat.

Steve:   You know, another dry eye, dry mouth drug isn’t going to work. We don’t need any of those. We need a drug for all of the diseases. Fatigue, joint pain, cognitive functioning, all those symptoms, and so that’s what we’re working on in this clinical trials consortium.

Steve:   And what’s amazing is these pharmaceutic companies really do appreciate and want to hear from the patients. But even more importantly, they want to share with each other on this clinical trials consortium and talk to the 20 key opinion leaders. So, that they can make sure that they’re speeding this along and that they’re doing the right thing for the patients. And I have to say it’s been rewarding for us and in the long run, will be rewarding for patients. Absolutely.

Brian:    You know, as somebody who doesn’t have Sjogren’s but is in a supportive role for somebody with Sjogren’s, it really makes me feel good that somebody like you and the people involved in your organization are out there advocating and pushing and doing everything that they can to help. And that’s, that’s awesome, awesome work, Steven.

Steve:   Well, thank you. I appreciate that. You know, and I don’t know if people know my personal story and they might’ve heard it in the bio, but my mom is a Sjogren’s patient and when I interviewed for this position, uh, 16 years ago now, we are a very small organization. There was only three staff, um, now we’re up to 15 staff members.

Steve:   But there was only 3 staff, very small organization. I came to the interview and I said, you know, my number one priority was research to uncover and unlock the mystery of Sjogren’s. And two was finding new treatment options because even 16 years ago there was even less options. Now there’s moreover the counter products, et cetera. But the idea of a therapeutic for the whole disease, so my mom didn’t have to suffer along with all the many, many other Sjogren’s patients that suffer, was a priority for me. And then awareness, so that people didn’t feel alone with this disease.

Steve:   And I think we’ve come a long way. We still have a ways to go and I can’t thank enough the physicians and the patient volunteers and the caregiving volunteers like yourself, Brian, that volunteer around the country to help us.

Steve:   Um, you know, we only have 15 staff, but most companies and other organizations that we work with think we have a staff of a hundred because of all the amazing volunteers, coupled with our, our staff.

Steve:   And, ah, we’ve come a long way, still a ways to go on things. But I’m very proud of where we’ve come so, the patients don’t feel so alone. And I’m hoping today’s interview and the things I’ve been doing over the past couple of years are giving some patients some hope. Because I want patients listening to know that our staff is here every day fighting for you. And that there’s definitely hope on the horizon for sure.

Lupe:     We really appreciate everything the foundation is doing. It’s awesome. We appreciate all the support groups because we can a lot of information from them.

Steve:   Absolutely. You know we can’t do everything. Obviously, as an organization, we’re limited on either funds or on staff size because of what we can handle.

Steve:   But one thing we’re always open to is new ideas. So it doesn’t mean we can implement the idea this year, but putting a bug in our ear about something that’s important to patients is always good. Y.

Steve:   You can send an email, you can send a letter to our office. I see almost every email, almost every letter that comes in, that has an idea. It percolates in my mind and it might take a while to make something happen, but you never know when you plant a seed, how it will grow.

Steve:   And so we surely want to be open to as many ideas from as many patients as we can. We’re trying to definitely attract and have availability services and resources to just about any type of patient that’s out there as best as we can. And I know we’ll probably get that to that in a little while, but we’re definitely open for ideas, criticism and other things because that makes us all grow and get better.

Lupe:     Absolutely.

Brian:    Definitely.

Lupe:     I have a question. Um, how are you able to reduce the time of diagnosis by more than 50%?

Steve:   Well, that’s a great question and I appreciate bringing it up because we’re very proud of our accomplishments, of reaching that goal that we set. So back in 2012, the Sjogren’s Syndrome Foundation set a goal to reduce the time to diagnose the disease by 50% over five years.

Steve:   And so what that meant is we had a baseline that it took almost 6 years to get diagnosed with Sjogren’s in 2012. And so, we knew we had a lot of work ahead of ourselves, to reduce that time.

Steve:   And so we employed a number of tactics to really focus in on this, when we hired a polling company to help us get the baseline. And then they helped us every year gauge where we were. They really told us it wouldn’t be possible to get to 50%. They said if we can get from 6 years down to 4, it the amazing. If we get 6 to even somewhere in the 4’s, um, they’d be shocked, cause it’s an entire shift of a mindset and a paradigm really that’s out there.

Steve:   And so, they didn’t know if it’d be possible. But we said, even if we get to 4.2, we might fail in the goal, but we’ve moved it forward.

Steve:   So we, the board of directors, which is all volunteers, our board is comprised of physicians, researchers and patients, and caregivers. The board decided that this is an important priority for us. And so we started out by doing a number of things.

Steve:   We went to many conferences to educate doctors. We were on podiums, we presented, we wrote articles in journals. We made sure Sjogren’s was everywhere, it could be over those five years. But the number one reason that we saw the increase and we know was the number one reason is, we recruited during the time of the 5, years over 500 awareness ambassadors.

Steve:   These are patients and caregivers that were willing to go out, knock on doors of doctors, leave information for them so, they would make sure that if they saw a patient with certain symptoms that they would refer them to a rheumatologist to get a workup for Sjogren’s.

Steve:   So, we went out to dentists. We went out to massage therapists and chiropractors because we know joint pain patients are sometimes lost at chiropractors or massage therapists, thinking it’s just aches and pains from life.

Steve:   And those doctors don’t know it could be a systemic disease. And they should tell the patients, hey, do you have a dry mouth and a dry eye? Do you have any other symptoms on this list? You might want to talk to your primary care or rheumatologists because maybe your aches and pains aren’t just from regular life.

Steve:   We went out to OB Gyn’s, the same reason, our disease mimics menopause. We need OB Gyn’s to pay attention to the symptoms and refer patients for further workup at that had the symptoms, plus others. And then we went out to every, just about every specialist is there are, primary care physicians and we went out to ENT’s.

Steve:   We went out to dentists and eye care providers, um, and the list goes on and on, to make sure that they knew to refer people that had these symptoms. Because oftentimes, our patients are lost in clinics, treating their one symptom. Never knowing that one symptom is connected to a very odd symptom that you would never think of connected.

Steve:   For example, my mom has tooth decay, majorly for many years. No one ever connected that with her joint pain or fatigue. Because who would think tooth decay is connected to fatigue? You wouldn’t even connect it. You’d think they’re totally separate.

Steve:   Your dentist is taking care of your tooth decay. You never mentioned that to your primary care doctor. So, you go in as a 40 something-year-old woman or man and you talk of fatigue and they’re like, well, you’re probably overworking, you’re traveling too much or this. And you never tell them that tooth decay or dry eyes, you have that or whatever.

Steve:   And if you do tell the doctor enough of the symptoms, they’ll make the dots connect very fast. But it’s oftentimes we forget those symptoms that are being treated by other doctors when we go to their primary care.

Steve:   So, educating the doctors, I’m referring these patients to a rheumatologist or a primary care physician, for that matter to get worked up for Sjogren’s was critical to moving this forward.

Steve:   And we saw this time go down and down and down and down. And at the end, we were very proud to announce 2.8 years. Um, with was the current time to take, to get diagnosed with the disease. And when I started here 15 plus years ago, it was over 10 years to get a diagnosis. So, we’ve come a long way, but in these five years, we’ve made a huge, fast gain to get down to 2.8 years. So thanks for bringing that up Lupe, I appreciate that.

Lupe:     That’s awesome. Sometimes you go to the doctor and they always say, oh, you’re not as young as you used to be. That’s what they always say.

Lupe:     Right.

Steve:   Yeah, unfortunately.

Lupe:     Yeah. Because of the time to diagnosis being cut by more than half. Um, is there anything being done to connect to the younger patients?

Steve:   Great question. And so sometimes, you know, patients don’t know about the things that we’re doing for that population specifically and so I appreciate the question. Um, because there are the number of things that we are doing for what we call the patients in their 20’s and 30’s.

Steve:   Although one thing we have for every patient, no matter what their age is, is support groups. We have 65 active support groups around the country, anyone’s invited to those. Uh, from teenage years all the way up to whatever age you are, you can attend a support group in your area, if there is one.

Steve:   We have them in most metropolitan areas. There’s 65 in the country, as I mentioned, but specifically for those in their 20’s and 30’s, we did start a Facebook group for the patients’ 20s and 30s. And there’s also about three or four conference calls we hold a year for patients in their 20’s and 30’s. It’s run by a wonderful patient in her 20’s out of New York City.

Steve:   She handles the calls, she handles the Facebook group, she talks to patients when they’re first diagnosed, they can call her. If people call our office, we can put them in the system and flag them as a person that would like to be invited to those meetings for 20- and 30-year old’s.

Steve:   And we don’t often know who is in their twenties and thirties, unless they tell us specifically, on the phone. We don’t collect birth dates, so, we don’t know who they are. So if you’re in our system and you get our newsletter already and say, why didn’t I get invited that meeting? We don’t know you’re 20 or 30 years old. So, please call our office and make sure you tell them that you’d like to be invited to the next 20- and 30-year old’s support group meeting. That way you’ll be on there and it’s a great service.

Steve:   We also host a luncheon every year at our national patient conference for that patient population, so that they can meet each other, have a lunch in a private room, share what’s happening in their life.

Steve:   Because as you can imagine Lupe if you’re at different ages with this disease, if you’re 50 or 60, you’re looking at different parts of your life, then if you’re a 25 or 35. Where 25 and 35 year old’s are looking to get jobs, they have to college, get married, can they have kids and raise kids. Will this disease affect that? What do they have to watch for pregnancy? Where a person in their 50′ and 60’s isn’t worried about that.

Steve:   So, it’s definitely a different kind of mindset when you’re younger and diagnosis with the disease. So, that’s why we started this group a number of years ago. Um, and it’s been wonderfully received by the population.

Steve:   In addition to that, we’ve seen an increase in the diagnosis of pediatric in Sjogren’s, so, patients under 18 getting diagnosed with the disease. We have, um, many patients, 10, 11, 12, 13 years old getting diagnosed.

Steve:   And so we have a pediatric support group, as well for parents of children with Sjogren’s. Um, and so they meet over the phone. They also have a Facebook group and it’s run by two wonderful moms, who help lead that entire initiative.

Steve:   And in addition, they help fundraise for us. And we just awarded our very first research grant in pediatric Sjogren’s and biomarkers in pediatric Sjogren’s. So we’re really excited about supporting that space.

Steve:   And in addition, we’ll have a pediatric Sjogren’s speaker at our national patient conference, next year in Phoenix, Arizona, so in 2020.

Steve:   So, um, we’re excited to have that because not only do the pediatric parents who will attend and the kids learn, but even the adults that will attend, will get to hear what pediatric Sjogren’s is like and how it’s different, how it’s the same. But get to realize that it’s affecting a younger population, as well. So we’re definitely working in that space in a lot of areas and we’re looking for more volunteers in the younger population to get involved with us, as well.

Lupe:     And how would they, um, get connected? Uh, like if they wanted to join the Facebook group, do they have to call you?

Steve:   Yup.

Lupe:     Okay.

Steve:   Yeah, they can call the office and we can get them the information for the two leaders of the group. And then they can reach out to them and then that way they can touch base with them and join the group. And they can be accepted into the private Facebook group.

Lupe:     Perfect. Okay.

Brian:    You mentioned the annual conference. Can you speak a little bit about that and when and where the next is?

Steve:   Yes, absolutely. So every year we have an annual patient conference. We rotate it around the country, all over the country. Last year when we were in Boston, Massachusetts area. We’ve been in Philadelphia, the year before that. We’ve been in Tampa and Chicago and we’ve been on the west coast, San Francisco and San Diego and Seattle.

Steve:   So, we were coming back out west, um, and we’ll be in Phoenix, Arizona on April 3rd and 4th. It’s a two-day conference, starts Friday – mid-day, goes all night until Friday evening with an awards dinner and a keynote speaker. And then it goes all day Saturday until about 3 or 4 o’clock on Saturday.

Steve:   We’ll probably have about 10 to 12 speakers at the conference, covering a range of symptoms and complications with the disease. We always have a wonderful doctor to do an overview of the entire disease to kick it off. And then we’ll always have a special section on dry eye and dry mouth.

Steve:   And then we’ll cover, who knows what other topics we’ll have next year. I know we’re trying to get a holistic speaker about alternative and holistic treatments neared with, with traditional treatments, we’ve had a speaker on that before, but we want one back again if we can get one. We might have one on fatigue or internal organ involvement, et cetera.

Steve:   And it’s open to anybody, member or not member of the SSF. It’ll be on our website in a few months with the agenda. And it’ll also be promoted in our newsletter, as well.

Steve:   And We usually have about 500 patients there. And I think what most patients benefit, besides the amazing speakers, you’ll leave with all the PowerPoints of the speakers and you’ll get to hear them, ask questions. I think they leave with a sense of being in a room of people that understand them, is what I often hear from the patients.

Steve:   They get there, they get excited to see that, you know, usually they come not knowing, there’s 500 people are going to be there. They think there’s going to be 100. And if, when they get in the room and realize it’s 50-60 tables of people, they really realize wow, I’m not alone.

Steve:   And then they get to meet people, all different ages, sizes, everything, from all over the country. We usually have about 30-40 states represented. People fly in from all over no matter what state we’ve been in, we usually have 35-40 states represented.

Steve:   And we’ll even have people come in from outside the U.S. Last year we had people from South Africa and Europe and South America attend our conference. And just a great way to see other people that look like you and have the same complications as you and you’re not alone.

Steve:   So, it’s besides the wonderful education you get, you get that camaraderie and meet some new friends, as well. So, watch our newsletter and watch our website for more information about that conference.

Lupe:     I think that’s the best part to meet people with the disease because I believe that probably 99% of the people that have it, they don’t know anybody who has it, as well.

Steve:   It is. It’s a little bit of a lonely disease because you get diagnosed. Um, and is this weird disease spelled with a j, umlaut over the o? You go home, you mentioned your sister, your mother, your husband, your wife, if you’re a male, whatever age you are, your mom, your dad, and they’ve never heard of it before.

Steve:   And you kind of feel a little weird, like you have this disease, that all of a sudden connects all the dots. You’ve feel a little release that you have a diagnosis now, but then you go home and no one’s ever heard of it.

Steve:   And you think, oh my goodness, what is this disease? No one ever heard of it. I never heard of it. And then you just kind of feel alone. Then you think, well, maybe these people that have this are weird.

Steve:   And then you don’t really know until you get around people and you realize, um, that you’re just like everyone else who has this disease. You’re no different. It’s just happened that you ended up with this.

Steve:   And I’ll never forget a young lady I met in Phoenix, she came to our walk, we had a fundraising walk, we have about 10 of them around the country. And she was sitting in the food court and she was crying. And um, I went over to her and she was in her probably late 30s, early 40s.

Steve:   And I sat down and I, and a friend was with her, who was around the same age. I didn’t know if they were patients, I didn’t know which one was the patient if they were. And I sat down and I said, are you okay? And she said, yeah, I’m okay. And her friend said she was diagnosed with Sjogren’s in the last 6 months. And I said, oh wow. I said, okay. So she was, I said, you know, or you know, what can I do to help?

Steve:   I told her who I was because she was so upset. And she said, well, my friend made me come to the walk. I didn’t want to come because I didn’t want to be trapped with people, weird people that have this disease.

Steve:   And they said, well, I understand, but she never met a patient before. And I said we’ll have you ever been to anything? She said, no. And I said, can I ask why you’re crying?

Steve:   She said, I’m crying because I realized everyone here looks like me and no one’s different. And I’m not like, you know, I thought maybe I’d come to a walk and everyone would be handicapped in wheelchairs or walkers and I would see this horrible future for myself. Or I’d see people that were very weird and not look like me. And she said, I just started crying. It was overwhelming to realize everyone around you pretty much looks like the acts like me. And we just got diagnosed with disease and it made me feel such relief that I wasn’t alone.

Steve:   I’ll never forget and that was probably 10 years ago, in Phoenix, in the mall that we used to hold the walk at. And I never forget that woman, ever because it just realized how important that part of even a fundraising walk was to patients.

Steve:   It wasn’t about the funds, it’s not about the money, it’s about connecting people so that they don’t feel alone. And that they, this disease, there’s people out there fighting for them, but there’s other people that have it besides themselves.

Lupe:     That’s exactly why we started doing the podcast and created the Instagram and Facebook, you know, to let people know that they’re not alone? And a lot of people when they’re recently diagnosed, they actually reach out to me via private message and they are all in a panic. So, I mean I do what I can to help them out.

Steve:   Yeah. And you know, we have over 200 volunteers that take phone calls from patients. So, if they call our office, we can connect them to people maybe in their same area code or at least some states. Um, usually area code, we have so many, but um, and they can call them and talk to them, so that they feel there’s someone, a couple towns over, at least to start to meet that have the disease. They can give them some local recommendations, etc.

Steve:   But yours and Brian’s service that you do, Lupe is amazing because they can hear podcasts, get to hear from different patients, experts about the disease. Um, and then your willingness to talk to them and be so honest and transparent, Lupe, is critical to all of us helping each other, the best we can. And I think you’re right, talking to another patient, having some hope from them, not feeling helplessness when they’re diagnosed. Just by knowing there’s somebody else out there that’s a little bit ahead of them, in this disease, meaning more educated, knows more, is a critical service. I’ve already thanked you both so much because your service has been wonderfully received and we really appreciate Sjogren’s Strong for sure.

Lupe:     And we appreciate you saying that. I think in the beginning, for me I always a little bit nervous to put myself off there like that, but it’s been so positive. I definitely feel we did the right thing.

Steve:   Yeah, and you know I think, I think it is a great point, Lupe, you know, not everyone has to put themselves out there like that. I mean I commend you and there’s others that have done things and put their story out there and are willing to get on stage and are willing to do a podcast, no one else really, you guys are the only ones doing that. And we need that and we appreciate it.

Lupe:     Yeah.

Steve:   But you know, if you’re a patient that doesn’t want to do anything, that’s okay too. I always tell people we have different events for different reasons. We have a team, Sjogren’s marathon program because some people want to still run and they want to prove to their disease, it’s not going to take what they love away from them. Or we have husbands, hint, hint Brian, that run in honor of their patients at marathons with us.

Steve:   And so that’s why we have Team Sjogren’s. But many people don’t want to do that. They never could, never would, never would want to. So that’s why we have walks because that’s an easy walk around a park or a mall, pretty easy. But if you don’t want the walk, we have some social events, where you can go to a Sunday afternoon event and enjoy an event there. If that’s not your cup of tea, a support group is. But we know that many people don’t want a support group, so they don’t like support groups.

Steve:   So, that’s why we offer different things. Because as they say, different strokes for different folks, it’s a great way. So, if you’re not willing to put your story out there, you don’t have to.

Steve:   And if you go to a support group, I promise you they’re not going to put you on the spot, to have to tell your story. And that’s what that woman in Phoenix was telling me, was she also didn’t want to go get trapped, where she couldn’t leave the event.

Steve:   That’s why the walk was good because there was many exits. it was a mall. She could sneak away. But you know, even if you go to a support group, you might only go once, get some information, not come back for a year, and then the doctor says, Hey, your liver enzymes are up, and you go, oh my gosh, what does that mean?

Steve:   You can go back to the support group again, even if you haven’t been through a year or three years or five years. You can go back again and say, hey, I was at the doctor’s last week and they sent my liver enzymes are up. Does anyone have experience with that?

Steve:   That’s what those meetings are. You don’t have to go to every meeting, to be a part of the support group. You can go to one a year, one every five years. That’s what the service is there for. And you don’t have to put your story out there if you don’t want either. You can go and just listen and sneak out the back door. That’s what everyone is here for to help people where they need to help.

Brian:    I really want to second that because we’ve been to a few different support groups, run by different leaders and they are welcoming and people are helpful and just talking to other patients, not necessarily even the support group leader. It can be comforting to people and it is a relaxed environment and if you haven’t been to a support group and you have one near you, please give it a try. You know, we know that it’s hard to get dressed and get out of the house sometimes, but it’ll be well worth the visit, so please give them a try.

Steve:   That’s great Brian, thank you. And they’re free. You know they’re free, you don’t have to be a member. You can go on our website and find the support group in your area. They’re listed as support groups, under the get connected tab, there’s a support group tab and then you pick your state and you’ll find the most local one to you. And then from there, you can wait until they post their most upcoming meeting and find the information and we encourage you to go, free of charge. Please go to the meeting and get the help and advice that you can from expert. Who’s better than another Sjogren’s patient to give you advice.

Brian:    Most definitely. Um, you’ve referenced the website before, but are there any other ways that people can get involved whether they want to donate or volunteer time or if they just want to get involved with this awesome foundation. Where should they start?

Steve:   Yeah, absolutely. I think the best way to start is really by joining the SSF because you’ll get all them flyers and materials and updates on what’s going on. So this $36 to join you get our newsletter 10 times a year, which has great information, written by doctors and researchers about the disease.

Steve:   Has information about upcoming events, et cetera. Then you’re in our database, so you’ll get invited to clinical trials that are in your area. If you decide you want to do a clinical trial, but you’ll get the flyer saying there’s ones happening in your area. You’ll get support group flyers when there’s a meeting in your area. You’ll get invited to events when we have them. Um, so you’ll stay connected in that way. And then over time, you’ll find something you might want to volunteer for. We might need a new support group leader in an area.

Steve:   We might need people to join a walk committee or a fundraising committee. We always need awareness ambassadors to help us increase awareness for the disease. And we have materials that we give you and you’d go out and help us aware that.

Steve:   We will be this next year increasing our advocacy work on Capitol Hill and through our local congressman and senators. And so we’ll be expanding our grassroots network. So, we’re going to need people to add their voice to that, as well.

Steve:   So there’s always opportunities and just like I said about the events and things to do, now everything’s for everybody. So sometimes you don’t want to do anything, you just want to read his newsletter and that’s great. You can read it, renew your subscription, maybe donate it one time a year to the SSF in general or not. Um, but some people want to volunteer and have, uh, add their voice to our fight. And so, um, that’s great.

Steve:   And there’s tons of opportunities that you’ll learn by getting involved, just through the newsletter and reading that and getting emails and flyers about things happening in your area. Um, and then you can choose what you want to step up to do. And we also need services.

Steve:   We always need a lawyer that can help with, uh, issues who can volunteer their legal expertise to us. We need specialists, physical therapists, and dentists, dental hygienists, all different types of doctors, um, that can help us, as well. And we need other specialists that can help, um, with other areas. You know, motivational speakers, life coaches, counselors, mental health individuals that can help us educate in certain areas. So, definitely, if you have an expertise that you think you can lend, please reach out to us as well. Um, we’d love to have, uh, your help in those areas.

Brian:    That’s great advice. If people are out there looking for a way to get involved and we appreciate that. And the links will be in the show notes below and we do get the Moisture Seeker newsletter and it is a great periodical. We’ve talked about it several times before and that’s, that’s a great place to start, as well. And you really see what’s going on.

Steve:   And I do want to mention there is a Facebook group that’s public. There is a private one that’s not run by us, although they use our name. And so that’s never been us, but we have a public page that has about 50,000 plus followers on it. Please follow us on Facebook cause you’ll also learn.

Steve:   But in addition, I just want to mention because, you know, if you have a need and you can’t afford our newsletter because you’re, you know, social security disability, you have high medical bills, whatever the reason, we have tons of scholarships available for free newsletter subscription.

Steve:   So, we have donors that give us money to help support those that can’t afford, but we know need the education and want the education. So, if that’s you, by all means, call our office and tell them you can’t afford a membership and we’ll give you a subscription. There really is hardly any questions ever or when someone calls in to give a free subscription to our newsletter.

Steve:   So, don’t use that as a hindrance. If you think $36 is too much because of what you have going on, then great and the next year we have it, you can renew and pay yourself. If you don’t, then you’d call it back again next year and say, you know, I’m still on social security, I’m in fixed income, I need another free scholarship and we’ll renew it for you.

Steve:   So, definitely consider that because we’d like to have the education information and not feel you had to pay the $36. That’s what donors give us money to and why we exist is to help everybody. So, by all means, don’t hesitate to call if that’s your case.

Lupe:     That’s awesome. Thanks for sharing that.

Steve:   Yeah.

Brian:    Well, as we wind down here, we want to give you the opportunity to leave with parting words to the listeners of Sjogren’s Strong, so if there’s anything you’d like to close with, now’s the time.

Steve:   You know, we could go on, as you know, Brian and Lupe for a long time, talking about things we’re doing and education and awareness and stuff. I usually like to end on, typically when I haven’t forum, like this is for Sjogren’s, patients who are listening, I mentioned already having hope, but also being proud of your thriver-ship and your survivorship with this disease.

Steve:   Thriving with Sjogren’s takes a lot of efforts, especially for some even more, and some are lucky and they don’t have as serious side effects of the disease, but getting up each day and doing whatever you can. if it’s from making lunch for your kids and getting them on the school bus, going to work, if you have a job, helping support your family, your husband, your wives, whatever it might be. You’re doing what you can and you should be proud of that. Cancer survivors are proud of surviving cancer, but oftentimes, people with chronic illnesses are embarrassed by being proud of surviving.

Steve:   Chronic illness isn’t going to go away. It’s going to be with you forever being able to achieve even the smallest milestone, you should celebrate that in yourself and never be embarrassed that you’re suffering from a chronic illness.

Steve:   And people don’t walk in your shoes. So, people don’t know what fatigue really is. is like with Sjogren’s. If you don’t have Sjogren’s fatigue, you can’t understand what fatigue is. Another person telling you to rest and take another nap is not good enough for fatigue. That does not work. They don’t understand it. But we do at the foundation, and we’re proud of you for being a thriver and a survivor at this disease.

Steve:   And just like a cancer survivor, you should be proud of that, as well. And so we hope that you’ll spread the word about the disease, so people know about it and have heard the word Sjogren’s. But also walk with your head up and being proud that you get up each and every day and do with what you can. And be proud that you’re involved in a community that really cares for each other. And get involved and find those people that can help and assist you through our organization and the support groups, et cetera.

Steve:   Never put your head down and feel embarrassed that you’re a Sjogren’s patient. You should be proud that you’re doing what you can each and every day. So, that’s why I’d like to leave with the viewers so that they know not only are we fighting for them, but they should be proud of what they’re doing, as well.

Lupe:     That’s great. Well, Steve, we thank you for coming on the show. We are looking forward to seeing you in the next couple of months at the 2019 L.A Walk.

Steve:   Yes, I will be there on October 19th. Yes.

Brian:    That’s awesome. Steven, we again thank you so much for your time and um, helping explain what the foundation’s doing to our listeners and hopefully, they’re going to flood your call centers and subscribe to the Moisture Seekers. At the very least get involved with groups, jump on Facebook and you know, really tackle some of these issues with community that you guys are building so well. So thank you so much.

Steve:   Thank you to both of you for all your work. We appreciate Sjogren’s Strong’s effort that you were all doing to help educate and bring people together, for sure.

Lupe:     Thank you, Steve, that’s awesome.

Steve:   Thanks.

Lupe:     We are so thankful for the efforts of Steve and the staff of the Sjogren’s Syndrome Foundation and want to thank all of them. It is because of their hard work and dedication that the time to diagnosis has been cut by more than 50%. And I am so happy to hear that they’re working on drugs to treat the disease and not the symptoms. For these reasons and many more, we feel it’s important to help support all of their wonderful efforts.

Lupe:     And this is why we are going back to the L.A. Area Walk as a team and not as individuals like we did last year. We hope you can find it in your hearts to support Team Living Sjogren’s Strong, as we raised money for the foundation.

Lupe:     We also hope that learning more about the foundation reinforces the fact that we are not alone in this fight. And that good people, people we don’t even know are fighting on our behalf.

Lupe:     Steve, Thank You and everyone at the Sjogren’s Syndrome Foundation for being a part of our journey.

Lupe:     We thank you for listening to this episode and ask that you share it with your family and friends, to help them gain a better understanding of what it is we deal with every day.

Lupe:     Until next time, sip constantly and stay hydrated.


Sjogren’s Syndrome Foundation –

Donate to the “Living Sjogren’s Strong” Team for the 2019 LA Area Walk for Sjogren’s.
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