Road to Rituximab: Matthew Englefield’s New Treatment Experience

Matthew Englefield has been living with Nephrotic Syndrome—Minimal Change Disease for the past 6 years. He maintains a page on Facebook to help offer support to other children and adults who live with this condition, called Matthew and Nephrotic Syndrome. We asked Matthew if he could share his experience of trying Rituximab as a treatment option for his Nephrotic Syndrome. A recent study has shown that Rituximab is more effective than Tacrolimus in maintaining disease remission and may be considered as first-line corticosteroid-sparing therapy for children with steroid-dependent Nephrotic Syndrome.

Hello, my name is Matthew Englefield. I am 18 years old, and I live in England, UK. I was diagnosed with Nephrotic Syndrome in 2012 and have been on various medications since then. These varied from trying long-term steroid treatment, levamisole, tacrolimus, MMF (cellcept) and a very hard choice—Rituximab. I had a kidney biopsy back in November 2017 to see what long-term effects tacrolimus had on my kidneys. It was then that I was told I have a form of Nephrotic Syndrome called Minimal Change Disease (MCD).

At the start of 2018, I met with my consultant to discuss the next potential form of treatment: Rituximab. This is a newer form of treatment that’s been used to treat Nephrotic Syndrome for roughly the past 10 years. I was very scared and drastically worried about trying out the medication, but I had one last option to try before Rituximab. That was to go onto MMF (cellcept) to see if it could maintain my remission. Sadly, after being on it for a month, it didn’t work. I was spiraling into another relapse, with protein present within my urine. I was left with no other choice but to go ahead with Rituximab.

At this point I was petrified. I didn’t know what to do as there were no other forms of medication to try. Learning about the side effects of Rituximab left me feeling shocked. It was a very big risk I had to take—in fact, everything has been a risk since being diagnosed with Nephrotic Syndrome. I decided to go ahead with the treatment because I was hoping and believing that Rituximab could make me medication-free and maintain remission. I had to be in remission for a good couple of months to be able to get the treatment, otherwise I was at risk for something to go wrong during the procedure.

For support during this tough time, I reached out to a family in Canada who I have become friends with over social media and asked them more about my last option of treatment. Their son Brock had recently gone through Rituximab. I was able to learn more about his experience and ask him questions about the procedure. This reassured me that I had made a positive decision in choosing my last form of treatment to help maintain remission.

I was given a date for my Rituximab infusion in August, but I was not looking forward to it at all. I was very worried about trying the new form of treatment and I was constantly questioning myself, “What if the procedure went wrong?” or “What if I had any allergic reactions while having the treatment?” I had spoken to a lot of people who have Nephrotic Syndrome and I was asking them for advice either personally or on my Facebook page (which is dedicated to help parents and individuals who suffer from Nephrotic Syndrome).

Finally, the day came to have my treatment. I got into the hospital, had my cannula (IV) inserted into a vein and had to wait until midday before I could have the infusion. I was not allowed to eat anything in the morning, but I could have fluids. If the procedure went well, it would take around 4-6 hours. At that point, all I could do was pray that it would. Before the Rituximab infusion, I had to have an antihistamine infusion to prevent any reactions taking place. Finally, after waiting a very long time the infusion began! I fell asleep during the infusion, as I was exhausted from waking up early in the morning, in addition to receiving the medication.

I began to feel very hot and had developed a sore throat at the start of the infusion. This quickly vanished as the procedure carried on. Even during the infusion, I was quite worried that it would go wrong. If I had a reaction, the infusion would have to stop. Luckily, this didn’t happen and after every hour they increased the flow rate of the medication, which made the duration quicker. I was able to do things while the infusion was taking place, including using the restroom and have a walk around. I was very glad I could do this, because sitting down for a long length of time can be very boring! The nurses were very kind and made sure I was entertained so that I could have some form of distraction to make the time go quicker.

After four very long hours I was glad to see that the infusion had come to an end! I had to wait an extra hour after it had finished to make sure I didn’t have any reactions or sudden side effects after the infusion had taken place. After a couple of days of having Rituximab, I lost a lot of energy. I found myself falling asleep a lot, which made me feel like an elderly man dozing off in the chair! But, after a couple of weeks of continuously falling asleep at very strange times during the day, I started to feel better.

Sophie, a friend of mine, was also going through the same process I had been through and was waiting for her Rituximab treatment. She was finding it a very distressing time, just like me and was contemplating whether she had made the right choice of treatment. As I had gone through the treatment before her, she asked me a lot of questions about my experience with Rituximab and what happened during the procedure. It felt great that I was able to help and reassure Sophie, who also suffers from Nephrotic Syndrome, while she was waiting for her date for her Rituximab infusion.

Rituximab can be a very scary experience, and I had second thoughts of having the treatment. But at the end of the day, I am glad I took the risk of going ahead with Rituximab for the hope of long-term remission.

It has been three months since I had my Rituximab infusion, and I do not feel as tired as I once did. I am able to maintain daily tasks that we all have to tackle within our lives. I feel great! I have gone back to Judo, which I had to stop when waiting for my biopsy, and can now do more physical activity than I could previously. I am now waiting for my appointment with my consultant which is coming up within the next few weeks, and because I have been in remission ever since having Rituximab, I am hoping to be taken off steroids (prednisolone). I’ve been on steroids for over a year and once I get off them I will be fully medication free—something I have not been since my diagnosis back in 2012.

I want to thank you all for reading my story and experience with Rituximab. I hope my story eases your anxiety towards trying Rituximab, for the hope of maintaining remission.

 

-Matthew Englefield

NephCure Kidney International’s Annual Countdown to a Cure Gala in NYC on Track for Record-Breaking Year

Event nears $1 million goal to support new treatments for chronic kidney diseases

NEW YORK, Nov. 1, 2018 /PRNewswire/ — NephCure Kidney International (NephCure) today announced that its 14th annual Countdown to a Cure Gala, to be held Thursday, November 8 at Pier Sixty, Chelsea Piers, nears its goal of raising one million dollars. Proceeds from the event will support new treatments for Focal Segmental Glomerulosclerosis (FSGS), IgA Nephropathy, and other diseases that cause primary Nephrotic Syndrome. FSGS is a rare and chronic kidney disease and the leading cause of kidney failure in children. IgA Nephropathy is a leading cause of chronic kidney disease worldwide, with approximately half of all individuals eventually developing kidney failure. Both FSGS and IgA Nephropathy can reoccur in up to 60% of kidney transplants. NephCure has devoted the past two decades towards investing in essential kidney disease research and is now in the final phases of bringing new therapies to patients.

Joshua Tarnoff, NephCure Chief Executive Officer notes, “Through nearly 20 years of NephCure-sponsored research, this relatively small organization has facilitated the creation of several promising drugs that are now in late-phase clinical trials. We have the rare opportunity to bring the first-ever approved treatments for FSGS, IgA Nephropathy, and Nephrotic Syndrome to our patients in the next several years.” Funds raised from this event will help launch a “Kidney Health Gateway,” an application that will quickly connect patients to trials, streamline research communication, and educate kidney doctors and their patients on available drug studies.

James C. McKenna, Chief Executive Officer and President of Hunter Roberts Construction Group (Hunter Roberts), will be honored at the event for his efforts towards finding a cure for Nephrotic Syndrome. McKenna is a civil engineer and talented builder with extensive experience in the Metropolitan New York area. Under McKenna’s exceptional leadership qualities and building skills, Hunter Roberts has quickly positioned itself to adapt to market trends and demands and is a leader in many markets. With McKenna at the helm, Hunter Roberts has completed unique and impactful projects – such as VIA 57 West, the MSK Laboratory Medicine Building, and Pier 57 – which have forever changed the New York landscape.

“It is an honor to be recognized at this important event,” said McKenna. “NephCure Kidney International has fought tirelessly for individuals affected by these terrible diseases. It makes me hopeful to see that their diligent research is beginning to bring new treatments and therapies to the market. I am proud of all the hard work that this organization has done. I look forward to continuing to work with NephCure until we cure these rare diseases.”

Joy and Noah Kerlin and family of Hamilton, New Jersey will also share their story. Noah is nine years old and was diagnosed with Nephrotic Syndrome two years ago. Due to his high-dose steroid regimen, he is now growing at a slower rate than his twin brother. Noah says, “I wish a cure could be found for Nephrotic Syndrome. I don’t like having to explain it to my friends, and I don’t like how worried my parents always are.”

Michael Levine, Event Chair, Vice President of NephCure Kidney International and owner of L&L Painting in Melville, New York, will also speak at the event. Levine’s teenage son Matthew has suffered from FSGS since he was three years old, and along with his family, Levine is a dedicated advocate for new and better treatments for the disease.

NephCure thanks all the sponsors whose support will help raise more than one million dollars this year. To date, the annual Countdown to a Cure gala has raised more than seven million dollars for NephCure to advance research into effective treatments for patients with Nephrotic Syndrome. This year’s event is made possible in part through support from gold sponsors Edward and Lisa Vaughan, Hunter Roberts Construction Group, and many others.

For tickets to the event, or to make a donation, please go to https://give.nephcure.org/CountdownNYC

NephCure Open Access: Spotlight On Chelsey Fix, Associate Director of Industry and Government Relations

Chelsey Fix started her career with NephCure as a research intern, and this spring she became NephCure’s newest Master of Public Health through her studies at Temple University. She also recently took on a new position at NephCure, working more closely with our industry and government representatives. We are delighted to watch Chelsey’s academic and professional career grow, and we sat down with her recently to learn more about her recent studies and how they will impact her new role at NephCure.

NephCure: You recently finished your master’s degree in public health and epidemiology at Temple. What made you want to study epidemiology?

Chelsey Fix: I really like understanding the relationships between people and diseases. I was inspired to go back for my MPH in general because of my work at NephCure. When I finished undergrad, I had wanted to be a genetic counselor, so when I first started working at NephCure, I thought I would gain some experience and then go back for genetic counseling. I changed my mind because I enjoyed the work in public health with NephCure more than I enjoyed anything else.

NephCure: How has your degree helped you understand the Nephrotic Syndrome community?

Chelsey: I learned a lot about how people make decisions about their health, and that there’s a science to health behaviors. That has helped me a lot in communicating why clinical trials are important. I think I better learned how academics and the people who run clinical trials think, which is helping me bridge the gap between patients, people here at NephCure, and people running the clinical trials. I’m able to sit on both sides.

I want to add the government bridge that comes from my MPH. So much of my education focused on government oversight of health, and that’s really helped me understand how the advocacy world works and also how the FDA works. The government side of this is something that I really didn’t understand until I got an academic education about it.

NephCure: How can a rare disease can be a public health issue?

Chelsey: In school we learned that everything is a public health issue—everything from the bus and transportation, to gun safety, to food choices. That’s all connected to public health. So specifically, NephCure is a public health organization because we’re focused on advancing research to bring new therapies to the market, which could first help a rare disease population and then later, help the greater population in general, with 1 in 7 people affected by Chronic Kidney Disease. Beyond that, we’re an organization that provides education about a disease, which is another root of public health—helping people gain health literacy to understand their disease and the world around them, and how it all impacts their health.

NephCure: What role does the government play in a rare disease?

Chelsey: Another public health mantra is that the fastest way to make a change that will affect the greatest number of people is through policy. The government has the power at Congress to enact policies that can change decision-making around health behaviors. In a simple way, an example of that is the trans-fat ban, which changes behavior for the greatest number of people. In our context, that policy change could be being on the DOD list.

Aside from Congress, the FDA’s role in getting drugs approved is instrumental for any sort of advancement in our policy. NephCure has a close relationship with the FDA as these drugs are coming down the pipeline. We can advocate directly to the FDA on behalf of the patient community and show them the impact of these drugs, so that the FDA is not just seeing it from an academic and numbers perspective but also seeing the people behind it. That’s really public health to me—the FDA seeing both the numbers behind how a drug works, but also seeing the people behind it and the difference that it makes in their lives. And then quantifying that and putting that into a drug decision.

NephCure: If you were going to launch an educational campaign with the government right now for a NephCure-related issue, what would the focus of your campaign be?

Chelsey: I would create a public health campaign around encouraging people to be supportive of clinical trials. Even if you can’t participate, help others participate. Clinical trials aren’t as scary as they might seem. Clinical trials are the future; they’re the only way to get new treatments. Even if you aren’t eligible for a particular trial, help raise awareness, help reduce the stigma around clinical trial participation.

NephCure: What’s your favorite part about working at NephCure?

Chelsey: Everyone has a different motivation for working towards the same goal. I don’t just mean the staff here, but the researchers and the drug companies and the patients. It’s interesting to see everybody get on the same page for a shared, passionate goal. Everybody is so passionate about it for their own reasons, but the end result will be the same. Ultimately, I like seeing that this shared collaboration is benefitting everybody to get new drugs on the market for our patients.

NephCure: What’s been your favorite NephCure memory or event?

Chelsey: Definitely Advocacy Day, specifically the first Advocacy Day that I ran myself. I was like a crazy person on the Hill. I walked 8 miles that day, according to my phone! I love the way people start the day out really nervous and then by the end they’re these expert advocates who are political insiders. I love seeing the transformation that happens within a day with people’s confidence about how they talk about their disease and how they advocate for themselves. To me, Advocacy Day has two major benefits: We advocate to Congress, and our messages are usually heard because we have a lot of advocacy wins. People also learn in that high-stress situation how to better talk about their disease and advocate for themselves, because you’re talking to these congressional staffers and trying to get their attention, so people learn how to do that through trial by fire.

NephCure: Anything you want to add?

Chelsey: I’ve been here four years, in a lot of different roles, and I’ve had the opportunity to do so many different things at NephCure. This is the most excited for the future that I’ve been in a long time. I think we have a lot of highly visible programs, with the right people paying attention: the FDA, ASN, KHI. Huge players in the field are paying attention and taking us seriously for the first time in our history. In the next year or two, we are going to have made a HUGE impact in the lives of our patients. In a few years, NephCure and Nephrotic Syndrome is going to look completely different from how it does today.

We congratulate Chelsey on her graduate degree and wish her the best of luck in her new role!

Dr. Kirk Campbell on: the PODOCYTE Study

We chatted recently with Dr. Campbell, a Principal Investigator for the PODOCYTE Study, to learn more about the trial, what it involves, and for which patients it might be best suited.

NephCure Kidney International: What is the PODOCYTE Study, and what is involved for patients who want to participate?

Dr. Kirk Campbell: The PODOCYTE Study is designed to test the efficacy [or effectiveness] of Acthar gel in primary Focal Segmental Glomerulosclerosis. To qualify for the study, patients need to be either resistant or intolerant to other treatments for FSGS. This study specifically targets patients whose FSGS is difficult to treat and who are at a higher risk for disease progression.

NephCure: Is this drug different from steroids or other commonly-prescribed treatments for FSGS?

Dr. Campbell: The study drug, Acthar gel, has been approved for the treatment of Nephrotic Syndrome for several decades, but the exact dose and duration of therapy, as well as the appropriate patient population within the spectrum of FSGS to administer the medication to, has not been that clear. This study seeks to get closer to answering those important questions.

The drug does not function exclusively like a steroid; there are steroid-like effects and anti-inflammatory effects, but one of the ways that this drug may work is by directly targeting specific melanocotin receptors on podocytes, the key target cell for injury in FSGS.

NephCure: Do you think it matters that researchers don’t know specifically why or why not this drug works?

Dr. Campbell: It’s a good question, but for every other drug we currently use for FSGS, we don’t completely understand why they work for this specific disease. All of the agents that we currently use are repurposed drugs from other clinical indications [i.e., created for use with other conditions], so this is a field that is really in need of innovation. But in the meantime, we have to make the best use of available, approved therapies, meaning drugs like this one and others, including cyclosporine, rituximab, and steroids, even if they weren’t approved specifically for FSGS.

NephCure: In this study, all the patients will receive the Acthar gel treatment. How does this work?

Dr. Campbell: All patients entering this study get the study drug, Acthar gel, upfront, and those who have a significant positive clinical response will have the option of entering an extended period where they would be randomized to the drug versus placebo. Those that don’t respond during the initial phase will be eligible for an extended, open-label enrollment where they will get the treatment. So all patients will have the opportunity to get the drug, and they’ll all be monitored closely and assessed for a clinical response. The information that we’ll get from this study will be very helpful and will benefit all patients with this disorder in the long run.

NephCure: How long do you wait for a response before moving a patient into the drug versus placebo stage?

Dr. Campbell: The initial part (6 months) is open label, and then, depending on the patient response, they would go to a second phase which would be drug versus placebo. That second phase is designed more to assess whether continuing treatment is necessary to maintain a remission, so only the patients who respond would potentially be in the second-phase placebo group.

In clinical practice some nephrologists use this drug for 6 months, and there are some that use it for 12 months. For patients who respond after 6 months of therapy, the question is: do you just stop treatment and monitor them, or should you continue the treatment to maintain that remission? This trial is designed to answer that very question—what to do with patients who respond after six months of treatment with Acthar for FSGS?

NephCure: I understand that Acthar gel is given as an injection—do you have to go in for the injection, or can you take it at home?

Dr. Campbell: Patients take it at home; they can administer it themselves. When the medication is being dispensed, they’ll receive a really nice handout with pictures and very clear instructions about administering the agent subcutaneously. The first dose is also administered at the study site under physician supervision.

NephCure: There are a lot of medical institutions in the greater New York City area. How do you partner with other nephrologists to spread the word about these clinical trial opportunities? For example, if there’s a patient who’s interested in participating who isn’t treated at Mount Sinai, is there a way for them to participate?

Dr. Campbell: Absolutely. In fact, the very first patient we enrolled in this study was not followed at Mount Sinai—she came from a colleague at a different institution who contacted me while exploring treatment options for steroid-resistant FSGS.

What we tell nephrologists and patients is that we are not seeking to disrupt the continuity of care and follow-up in well-established relationships between the patients and their nephrologists. We are only offering the opportunity to engage in studies that are well-controlled and can possibly offer a therapeutic benefit in patients who have treatment-resistant FSGS. We will see patients in their study visits, but outside of that, they maintain their relationship with their outpatient nephrology physician.

NephCure: Why is it important for minorities and people of color to participate in clinical research, and especially, the FSGS population?

Dr. Campbell: That’s an excellent question. First, participation in clinical trials has traditionally lagged among patients from underrepresented minority backgrounds. That goes for trials in nephrology as well as in many other fields within medicine.

It’s particularly important for this study because FSGS is far more prevalent in patients from underrepresented backgrounds.. [African Americans are four times as likely to develop FSGS than European Americans.] The prognosis can also be worse, with higher rates of progression towards end stage renal disease. So it is especially important for patients from minority backgrounds to be aware of studies like this and to take advantage of the enrollment and the close monitoring that’s involved.

NephCure: In your experience, what’s the biggest obstacle or fear that patients have about volunteering for clinical research, and how do you address or alleviate their concerns?

Dr. Campbell: I think patients often have a lot of questions. They want to be aware of all the different treatment options available and want to be comfortable that they’re not being swayed in a particular direction that could negatively impact their health. Patients also often want to use therapeutic options that have been time-tested, ones that have been proven to work with minimal side effects. Inherently in clinical studies, often-times the side effect profile of the drug hasn’t been clearly established, so patients can be a bit concerned about that.

Finally, a lot of them will say that they don’t want to be guinea pigs, that they don’t want to be experimented on, for fear again of negative outcomes. But patients get the closest monitoring when they’re in a trial: Every symptom and every new medication that they take must be clearly described and documented by the research team. Patients enrolled in clinical trials, because of the close scrutiny on them, end up getting excellent medical care and are watched much more closely than they would oftentimes be in routine clinical practice. Furthermore, there is an opportunity to try a therapy that can often work better than the traditional options. We try to reassure them with those realities.

NephCure: Final thoughts—what would you say to someone who’s on the fence about participating in this study?

Dr. Campbell: There are currently no clinically-approved drugs specific for FSGS. The drug being tested in this trial has been approved for Nephrotic Syndrome, and it is a therapeutic option that will be better understood by a study like this. For this disease, we don’t have a lot of options when patients don’t respond or don’t tolerate the first-line therapy. Participation in trials like this one can help us all understand how to better treat our FSGS patients.

To learn more about the PODOCYTE study, contact us at PatientAdvocate@NephCure.org, or you can visit the study website here.

Kirk Campbell, MD, is an Associate Professor in the Division of Nephrology and the Vice Chair of Diversity and Inclusion at the Icahn School of Medicine at Mount Sinai. He is also the Director of the Nephrology Fellowship Program and an Ombudsperson for medical students. He is board certified in Nephrology.

Dr. Campbell is a graduate of the University of Connecticut School of Medicine and completed his residency training in Internal Medicine at Yale-New Haven Hospital and a clinical and research fellowship in Nephrology at The Mount Sinai Hospital. In addition to treating patients with renal disease, Dr. Campbell leads an NIH-funded research program focused on understanding the mechanism of podocyte injury in the progression of proteinuric kidney diseases.

He is a NephCure Young Investigator Awardee and a recipient of the Carl Gottschalk Research Scholar Grant from the American Society of Nephrology. Dr. Campbell is a member of the Medical Advisory Board of the National Kidney Foundation Serving Greater New York.

Mary has lived with FSGS for the last 17 years. Here, she shares her ten best pieces of advice for navigating life with chronic kidney disease.

*Editor’s note: We are pleased to bring you this article from a guest blogger. The views expressed below are Mary’s own and do not necessarily represent the views of NephCure. Information posted on our site is not intended to be medical advice and should not be considered medical advice, nor is it intended to replace consultation with a qualified physician or other health care provider.

1. Educate yourself about your disease.

I have researched and learned so much navigating a chronic kidney disease for almost 20 years. Anyone on this journey knows that there is so much to know and so much still to learn! Read every article you can find and talk to your doctors—we have so much information at our fingertips. Be sure you are gathering information from reputable sites; NephCure and the National Kidney Foundation can help you find the latest studies and most credible sources. Your doctors know what’s tried-and-true as well as what’s brand new in the field.

2. Get a second opinion.

Insurance companies will give you the chance to see doctors for second opinions—take advantage of this! Most of the drug therapies for FSGS and Nephrotic Syndrome are still in experimental stages. Be informed and know what you are taking; ask about the risks versus benefits for each new drug you start. Make informed decisions about your care, as there are many choices today. If you start the discussion with your doctors, you can give them the opportunity to collaborate—and that is to your benefit.

3. You must be your own advocate.

This is crucial in navigating the modern scope of medicine. If you don’t have time, or the task feels too daunting, appoint someone you know and trust. You can also seek an expert’s assistance. Whether it’s you or someone else, someone needs to be looking at your case holistically. In my experience with the way our medicine and insurance companies work together, there are specialists for each area of our care. While it is beneficial that you have someone who is most knowledgeable in each particular field, they usually only have time to go over your current symptoms, review labs, and make an assessment. We are not a heart, and a kidney and a brain… we are all of these, working together 24/7. It is imperative that someone oversees your whole case to get the whole picture.

Keep good notes in between appointments on what is going on throughout your body. In my own journey, this led me to study Homeopathy. It is a practice that looks at the whole person—the holistic view—and I am so grateful for this.

4. Consider complementary therapies.

There are many alternative options today. In America, we rely heavily on doctors and insurance, but in most other countries, a lot of what we see as alternative choices are mainstream. Explore and see what adjunct therapies work well for your individual situation. There are Homeopathy, Acupuncture, Chiropractic care, Massage and other body working methods; the list goes on. What gives you the most healing? Think outside the box and stay open minded—keep learning.

For me personally, it was a combination of therapies that continued to change as my pathology shifted. Look at your alternative options and talk to your insurance company to see what they offer. Sometimes you may be required to pay out of pocket, which, when it means higher health, is worth it if you are able.

5. Be kind to yourself.

While you and your advocate are busy researching, remember to be kind to yourself. You may need to use rewards for taking good care of yourself. It can be whatever gives you peace. Taking a walk somewhere beautiful, allowing time for a restful nap, spending time with people you love… the list is endless!

Slow down and listen to what your body needs. The rush of our busy lives needs to slow down so we can listen and respond. Nobody, not your spouse, parent or advocate can do this for you. Make time for what brings you peace, make time to heal, and allow yourself to receive from loved ones—not only give.

6. Monitor your diet carefully.

The well-known quote by Hippocrates, “Let food be thy medicine…” is still valuable information today. We are what we eat. Eat thoughtfully and you will feel the difference. In renal disease, there are many values to know and adjust your diet accordingly. Check to see if your insurance will cover you to see a professional nutritionist; they have so many ideas and options to tailor as you wish. You can sometimes avoid multiple supplements by just eating the correct foods for your unique body. I’ve found this to be so helpful and makes a difference in my own quality of life.

7. Take control where you can get it.

Another lesson I’ve learned is to take control where I can. Take steps to manage your health, organize your surroundings, and stay positive—you are not a victim. Keep a list of questions as they arise so you are ready the next time you talk with your health professional. Filing or keeping track of your labs and medications as they change is helpful to look back on and often helps in looking at the whole story. If exercise is what you are missing, make a plan that suits you. It makes us feel weak when things are seemingly spiraling out of our control—do something! Join a support group, see how you may be able to help others—there is strength in numbers for sure! I find that the more I can be in control of, the less that is beyond me, and the more gratitude I feel for what is going well. Look at the positive and do what you can to see the good in each situation. With chronic illness, some days this is tough! Realize it, feel it, and then ask yourself if you can do more to help meet your goals. Sometimes there is not much more we can do… than practice gratitude.

8. Exercise.

We know it’s good for us, but not all of us love it. Find what feels good and works for you. When it comes to working out, it is not one-size-fits-all. I personally love yoga, and I feel it helps me the most. It has many health benefits and depending on what type you practice, there are many fitness levels to choose from. It is crucial to keep moving and in doing so, avoid other health issues that may complicate your kidney disease. If you can exercise outside—even better! We all need at least 20 minutes of sunshine a day and surprisingly, many find that difficult to achieve.

9. Find a confidante or peer supporter to lean on.

As you are gathering information, meeting doctors and making informed decisions, it can be very helpful to have a wise friend or confidante to talk things over with. I feel blessed with great support, but one person in particular who is very helpful is a cousin who has FSGS as well. Our doctors practice differently, have different protocols and we ourselves have very different symptoms in our disease. It is so enlightening when we discuss what we are going through, and nobody gets it like her! She is going through or has gone through similar situations: physically, mentally and spiritually. [Editor’s note: NephCure offers a peer support program called Patient Connections, where you can be connected with someone who has traveled a similar disease journey. Learn more here.]

Find that person that gets your highs and lows—we all have them. Perhaps you have your faith or a clergy member that can be of great support, I know for me personally it has been key. Share with your family and friends, mine have been my greatest support! I’m also fortunate to have a husband who is by me every step of the way. We all need someone that we can count on. It lightens the load when we share, and we can learn so much from others.

10. Empower yourself.

Finally, and in my opinion most importantly, become empowered. This sounds simplistic, but it has been very profound in my life. Every juncture takes some amount of thought, time, worry… each decision may be very different. Be kind and gentle with yourself; take the time you need to gather all the facts and come to an informed decision. Once you’ve exhausted all of your research: own it! Know that at this time, you have a choice on how to proceed, and you’ve made the best decision for you. This acceptance, no matter what it is, gives us the strength to move forward with confidence. I have found this subtle wisdom to be key in staying positive, while keeping focused and enjoying daily life.

These 10 nuggets can help add quality to our lives when health can be a challenge. Acceptance is the reward that allows us to live with freedom and joy.

Mary Farradj has lived with FSGS for the past 17 years and has been a homeopath for 5 of them. She recently started dialysis treatment and is waiting for a kidney transplant from her sister. To learn more from Mary, or if you have a topic you’d like Mary to explore in further articles, please feel free to ask a question in the comments below.

NephCure Open Access: Spotlight On Jessica Martin, Chief Operating Officer

This March, we celebrated Jessica’s five-year anniversary with NephCure Kidney International. During her tenure, Jessica has been involved with NephCure at all levels and knows the nuts and bolts of everything we do. In fact, in response to her wealth of knowledge, we thought it apt to bestow upon Jess her very own hashtag: #JessKnows, which we use around the office often!

We chatted with Jessica recently to commemorate her five years with NephCure. Below, we offer a closer look at who Jess is and what her role at NephCure entails.

NephCure Kidney International: You’ve been at NephCure for five years. What’s your favorite part about your current job?

Jessica Martin: It’s different every day. I don’t know what any given day is going to look like until I walk through the door. There’s always a surprise waiting for me in my inbox!

NephCure: What are all the different things that you do?

Jessica: Finance, HR, Admin, Legal, Facilities, IT. Though we outsource some of that.

NephCure: In 60 seconds or less name all the positions you’ve held at NephCure.

Jessica: Oh my gosh! Office Administrator, Grassroots Operations Manager, Director of Operations, National Director of Program Operations, and now Chief Operating Officer. And I think that’s in order!

NephCure: In your five years here, what has surprised you most?

Jessica: Probably the lengths that people will go, specifically caregivers and family members, to get something done for their patient. We know people who have flown across the country for a second opinion, or tried to obtain foreign currency to trade in for donations, and all kinds of different fundraisers. The ideas that people come up with to try to raise money or find a cure always surprise me.

NephCure: What event do you look forward to the most?

Jessica: All In for a Cure. Because of the candy bar!

NephCure: Describe the candy bar.

Jessica: When I say candy bar, it’s not like *a* candy bar. It’s a table full of candy—a “candy kiosk,” we call it. The first time I saw it I was like, “Oh my gosh, these are my people!”

NephCure: What has been your favorite memory of an event?

Jessica: Probably Advocacy Days, and also our Volunteer Leadership Summits. At both of those, you get to see all these patients and family members get together. I think we could have an event where we just put everybody in the same place and let them talk and tell their stories to each other. That’s what Advocacy Day used to be—it was the only time that we could get patient families from around the country together. We used to have Advocacy Days where people would tell us, “This is the first time I’ve ever met another patient.” We bring strangers into a room and they leave hugging and crying, and they all have each other’s phone numbers, and they’re saying, “When am I going to see you again?” It’s amazing. Sometimes later, I’ll see on Facebook two people that I know didn’t know each other before the event, and now they’re all over each other’s Facebook pages and cheering each other on.

NephCure: Is there something that makes you realize, this is why we’re here?

Jessica: May was very tough. We lost three patients, two of whom we knew really well. We were all really upset. When something like that happens, obviously there’s a part of me that feels like, yes, that’s why we do this. But we also can’t get mired down in it. We have to be able to come back up and keep working.

There’s a lot of nights or weekends where a staff member will see an article or Facebook post that references FSGS or something related to our work, and we’ll text each other, “Oh my gosh, did you see this?” It’s a part of our lives now. When I get a text at night—and I have a different ringtone for work people—I might think, “Oh someone is going to be out sick tomorrow or something.” Then I’ll look and see that it’s something good that happened that we’re sharing with each other! I like that, because it’s not just a job. It’s a part of our lives and what we do.

I will say—I had been working here for about 3 months when I was at a jewelry party and happened to overhear someone say, “He didn’t feel well. We took him to the emergency room, and they said he was spilling protein.” I said “Wait! Tell that story again!?” I was like, “Call me at work tomorrow, we’re going to get you to the right doctor.” I listen for that—I listen for people saying kidney disease, or protein spilling. I think I always will.

NephCure: How did you end up with NephCure?

Jessica: I had cancer 13 years ago. During that time, I started volunteering with a cancer-oriented nonprofit. I knew nothing about nonprofits, I had never done charity work or anything before, and I loved it. I said to my husband, “If I’m going to go back to work, this is what I want to do.” His famous line is, “Why would you work for a nonprofit, it says right in the title you’re not going to make any money!” But I had worked in software before and thought, “I’m not going back to software. If I’m going to put the kids in daycare, then I have to do work that I care about.”

I started looking for admin work because I’d never worked in nonprofits before. I found NephCure and had no idea what it was. At the time, it was run by a management company who ran 3 other nonprofits. When I interviewed, they asked if I wanted to work for NephCure or one of the other nonprofits, a community fund. I was like, “Ah, I’ll go with the healthcare one.” Then with people leaving and roles moving around… As it turns out, I did have some skills that I had kept to myself for a while. I was like, “Yeah, I could probably take on some other roles.” I call it the perfect storm—the way things evolved, this being where I landed.

NephCure: Last year was a pretty momentous year for you. What happened?

Jessica: Last year, our CEO resigned, and our board asked me to take on those duties with the help of some board members. I did and learned a lot—the biggest of which is that I don’t want that job! It was invigorating, it was an adrenaline rush, and my kids didn’t talk to me for periods of time because I was traveling so much and they were mad. I know that I don’t want to do that—I don’t want to travel or work those hours anymore. But I learned a lot, not just about NephCure, and not just about the responsibilities necessarily, but about being that person where “the buck stops here.” It’s very stressful. I am ridiculously proud of how we all handled things though—everybody stepped up to do more. We got through. I learned to delegate, I learned to outsource, I learned to interview CEOs. My proudest moment was the day that Josh started! Because I finally knew that we did it, we got through that year, and we had who we needed to be able to continue. That year will go down in history, certainly in my life, as one of the craziest ever.

NephCure: What excites you for the future of NephCure?

Jessica: I feel like we’re more stable than ever because of the people we have here now. We know what we’re doing, and we have this singular purpose with clinical trial awareness. We have a ton of work to do, but just the fact that we have all these pharmaceutical companies talking to us still blows my mind!

We have an end goal. We’ve always talked about finding cures or treatments, but there was not necessarily always a tangible plan in place for accomplishing that. There was a little bit of throwing things against the wall and seeing what stuck. We’re done with that now. We know what sticks, we know what works, and we know what we need to do. That makes it feel a little bit easier—there’s all these smaller milestones that make it tangible and easier to get to. I don’t know that we’ve ever fleshed it out in that way before.

NephCure: Anything you want to add?

Jessica: I’ve worked at a lot of places, but I’ve never worked anywhere for longer than two years. That I’m still here is a testament to the fact that I’m not bored—we’re doing some really exciting stuff and moving the needle forward.

The group of people we have working here—and this is not an accident, this is on purpose—are the most hardworking, ethical, passionate, smart, funny, compassionate people I think I’ve ever met. The group that’s here has seen some things, they’ve been through heartache, they’ve been through change, they’ve been through you-name-it. And they continue to do a great job. I certainly couldn’t have gone through last year without these people. There’s no question.

We’re honored to work alongside Jessica in our fight to find a cure for FSGS and Nephrotic Syndrome. Help us wish her a happy anniversary by leaving her a note below!

Why I Do What I Do: Spotlight on Kara Jones, Patient Mom

On October 6th, the first annual Silicon Valley Pig Jig will be rocking the day away at the San Jose Giants Muni Stadium in California. The Silicon Valley Pig Jig (or SVPJ) is an all-day live music festival, with great bands, delicious food, an amateur barbecue competition, beer garden, craft vendors, kids zone and games, all set in a fun tailgate environment. Number 1 hit country music singer Dylan Scott, with singles “My Girl” and “Hooked,” is headlining. Longtime NephCure supporter and patient mom, Kara Jones, is leading the efforts behind Silicon Valley Pig Jig, and she recently told us more about what to expect at the upcoming inaugural event.

NephCure Kidney International: How did you first find out that your son, Christian (known affectionately as Cheech), was sick?

Kara Jones: It started when he was 2 years old. We were in the process of potty-training him, so I didn’t realize how infrequently he was going to the bathroom. He had what I now realize are all the classic symptoms—puffy eyes, edema, and so on. One night he was running around in his diaper, and his belly was extremely distended. My mother-in-law felt his stomach and said, “This is not good.”

We took him to the doctor right away. We got lucky, because our pediatrician had done rotations in the nephrology department and was immediately familiar with Nephrotic Syndrome. We were quickly introduced to our doctors at Lucille Packard, and Christian has had those same doctors now for 16 years.

Cheech is steroid-dependent and a frequent relapser. He’s been on Prograf, Cytoxan, Cellcept, and Cyclosporine. He’s done three rounds of Rituximab. Now he’s on Myfortic, which is supposed to be less harsh on your GI system. I’ve lost track of how many relapses he’s had and how many times he’s had to go to the hospital because of them. His immune system is a wreck. I often wonder if he was born with a weak immune system, or if all the years of the immunosuppressants have wreaked havoc on him.

He graduated from high school in May. One of his good friends has family in France and invited him to go over there for a month this summer—his first trip abroad! As fate would have it, three days before he left, he started to relapse. Prior to that, he had not relapsed for close to a year. For the first time ever, he is managing a relapse on his own. He just texted me to say that he’s finally trace as of this morning.

NephCure: Throughout so much of Cheech’s journey, I know you’ve been deeply involved with NephCure. How did you first get involved?

Kara: It was at a pivotal point for me. Cheech was in the fourth grade, and he had just had a bad relapse and had been in the hospital. I knew he wasn’t feeling well, but he wasn’t throwing up and didn’t have a fever. I’ve always tried to treat him just like any of our other kids, so I said, “Look, you’ve got to go to school.” I dropped him off, and he was so bloated and overweight and chubby-looking. His clothes didn’t fit right. He walked into that classroom all by himself with his head hanging so low. It was such a painful time, to watch him go through that. It was devastating. I drove home and thought, “I am so tired of this.” I was tired of taking him to doctors’ appointments and giving him medicine that we didn’t even know if it was working, and all the damage that I knew it was causing him. I said to myself, “I’m done just watching this happen. I have to be more involved.”

I went home and called someone from NephCure and said that I wanted to hold a walk. I got lucky, because a lot of my friends had watched Cheech suffer, and saw the pain I was going through too, so they jumped in to help. We had the first walk in 2010, and we did it every year since then.

NephCure: Where did you get the idea for the Silicon Valley Pig Jig?

Kara: That came from the Tampa Pig Jig. I was so impressed with what a bunch of young men could do that I figured a bunch of moms could do it, too! The walk was great and I enjoyed the process, but I got to the point where I was yearning for a bit more. We wanted to do something that we thought would get our early 20s and teenage kids more excited about going and being involved.

NephCure: Can you describe the event—what will the sights and sounds be?

Kara: It’s going to start early in the morning. There will be people laughing and having a great time, barbecue teams setting up, people having fun with their tailgates—we’re going to have an award for the best tailgate environment, so people will be decking those out! Everyone will be having a lot of fun, there’ll be great music playing, and there’ll be lots of good smells, smoky meats cooking in the air. All of this will be taking place in one of my favorite places in San Jose—the San Jose Giants Muni Stadium! My husband and I started going to games there before we were even married, and I feel like our kids spent their summers watching baseball games there. So I picture this all happening at a spot that’s personal to me, surrounded by 20 to 25 of my closest friends who have put their heart and soul into this great event. We have amazing support from the Silicon Valley and San Jose community and so many great businesses. Everyone is making us proud to follow in the footsteps of Tampa Pig Jig!

NephCure: Can you describe the barbecue competition?

Kara: Businesses or individual teams can join the barbecue competition. We’ll have about twenty teams, and they’ll be judged on tri-tip, ribs, wild card, and best overall. We’ll also have an award for best tailgate setup. We’re lucky to have the California Barbecue Association coming out to help us with the judging. Even though this is a non-sanctioned event, they’re going to judge the entries as if it were, so the barbecue teams will be able to get professional feedback on the foods that they turn in.

NephCure: Is there going to be a kids’ area?

Kara: Yes, we’ll have a whole kids’ zone with inflatables, face paint, crazy hair, games and something we always did at the walks—cards for kids in the hospital. We’re carrying on that tradition, so there’ll be a card table set up with all the supplies if you want to make a card for children who are in the hospital.

NephCure: Will there be something for patient families at SVPJ?

Kara: Yes! Our goal is to have at least 20 patient families at the Pig Jig. They’ll be treated as VIPs and will receive an All-Access Pass. We would love for patient families from near and far to come and meet and mingle with others. We’ll have a gathering for everyone at 2 pm in the sponsor lounge. I’m hopeful that some of the health professionals from Lucille Packard Children’s Hospital will be there, too.

NephCure: I’m so impressed with how many sponsors you’ve gathered. I know many people are daunted by the idea of asking friends and business owners for money. How did you learn to do that?

Kara: You have to find the right people to help you. I have been a stay-at-home mom or teacher for most of my life, so I have not been hanging out with CEOs or decision-makers of companies. But I am lucky that my husband does and has friends who do as well. If you personally don’t have those connections, find a friend or someone you trust who is well-connected and invite them to be on your sponsorship committee. Ask them to help you by making those introductions.

Our friends have really gone to bat for us. One gentleman who’s done a lot recently said to me, “Kara, you have the passion, and you can tell the story, and that’s all that people really need to hear. How can they not jump on board?” Our friends have made so many introductions and gotten us in front of a lot of business owners. They’ve really taken on this cause with the same passion that a parent of a child who was sick would.

There’s a group of 4-6 of us who have been meeting every other week since February. We go over our list, manage our contacts, figure out if there’s any overlap with businesses or who knows who. Even though we’re all volunteers, it’s not really a “volunteer gig”—we’re all taking it very seriously!

I hate that I’m in this situation, but who better than me, as a parent, to make the ask. Because it is so personal—I have to find a cure.

NephCure: Is there anything else we should share?

Kara: Yes! Partnering with KRTY and the San Jose Giants has been vital for us. Being able to say to potential sponsors that we’ve got KRTY behind us and we’re doing this at the San Jose Giants Muni Stadium has given us immediate credibility. KRTY have been so supportive in getting good music for this event. I cannot emphasize the importance of those two parts of this “puzzle” enough.

The volunteers inspire me every single day. On Sunday, the two women who are spearheading volunteers were working all day on this together. On Saturday, the two women who are doing merchandise were putting their spreadsheets together and working. And they all work full-time! I am just amazed at how much of their own personal time they’re giving up. My friend Teri Molinaro is a full-time lawyer with three kids, but she is dedicating above and beyond. It’s amazing, what they’re all doing and how much they’ve backed up Pig Jig and NephCure.

Throughout all of this, my many years with NephCure and spreading awareness and fundraising, my main goal is that one day, everyone knows about NephCure and knows about Nephrotic Syndrome.

Learn more about the Silicon Valley Pig Jig at their website: siliconvalleypigjig.com

If you’re interested in learning about sponsorship opportunities, please contact Kara: siliconvalleypigjig@gmail.com

If you’re interested in attending the Silicon Valley Pig Jig as a patient family, please contact Allison to register: akostiuk@nephcure.org