Medical Hero Story: Juana Espino, Motherhood & Cervical Cancer

Juana Espino, her husband and two children were all looking forward to the birth of her third child. Two weeks before her delivery date, Juana started spotting blood. Juana immediately made an appointment with her obstetrician. During the exam, the physician located a mass near her cervix and recommended a biopsy, after the baby’s birth. Juana’s c-section went well and her new daughter was healthy.

But Juana was not.

The results of the biopsy indicated that she had Stage 4 cervical cancer.

“From there, it was just a rollercoaster, at first,” recalled Juana. “I didn’t have health insurance. You always have a pap smear at the beginning of your pregnancy, and mine was normal. The cancer had really grown while I was pregnant, and the doctor was worried about it metastasizing.”

The incidence of cervical cancer complicating pregnancy is low; only about 1% – 3% of woman diagnosed with cervical cancer are pregnant or postpartum when they are diagnosed. (1)

After discussing several options of treatment, Juana’s obstetrician advised that she meet with Dr. Joseph A. Lucci, a board-certified gynecologic oncologist at The University of Texas Health Science Center at Houston (UT Health). Dr. Lucci was also the Principal Investigator of a clinical trial treating Stage 4 cervical cancer. Juana met with Dr. Lucci and learned more about the course of treatment that the trial would include: a hysterectomy, followed by 6 weeks of chemotherapy and radiation.

“The good thing is, I have a big family,” said Juana. “I talked about it with my husband and my 6 sisters went with me to talk with Dr. Lucci about the clinical trial. I am grateful that I had a big support system. I was truly blessed.”

Since Juana was the mother of a newborn, it was decided to delay chemotherapy and radiation for two months. This lead to another difficult decision.

“Because I was having radiation treatment, we decided that my mother would take care of our baby, to be on the safe side,” Juana recounted. (Patients receiving certain types of radiation treatment are advised to limit or avoid contact with children under the age of 18 and pregnant women. (2) “It was hard, to be honest, but  I knew my mother would take good care of her. I did get to see the baby, of course, and when I did, I was really careful. I would dress in layers (because of the radiation) and hold her on a pillow, not directly.”

Juana’s sisters were encouraging when the effects of the radiation treatment became particularly severe during the last part of treatment. “I didn’t feel as sick during chemo as I did during the radiation,” Juana explained. “The radiation was really painful and my sisters kept telling me that I could do it.”

Aileen, Juana’s niece, was also instrumental in supporting her during treatment. “She postponed going to college, to be with me on this journey,” said Juana.

Juana was impressed with the care she received during the clinical trial. “I could call Carole Robazetti (the coordinator) in the middle of the night, and she’d be there. Dr. Lucci was also available at any time to discuss how I was feeling and what was happening,” said Juana. But Juana didn’t discuss one major impact that she experienced, until three years after the trial had concluded.

While participating on a CISCRP Patient Advisory Board, Juana listened to panelists describing the physical and emotional impacts of severe atrophic vaginitis, symptoms that she was experiencing, but never discussed with Dr. Lucci or Carole. (CISCRP Patient Advisory Boards solicit feedback and gather valuable insights directly from patients and their support network on a variety of critical clinical study related areas. Learn more here.

“I was afraid to speak up and after I heard the others share their stories, I decided to talk with Carole. She asked me why I hadn’t said anything before, and I just hadn’t felt comfortable.” Juana was prescribed medication that has improved the condition significantly.

The treatments Juana received in the clinical trial eradicated the cervical cancer. Juana and Carole became friends.

“I really wanted to give back somehow, and Carole told me about WOW, the Women Well Program,” said Juana. WOW was founded in 2018, under the umbrella of the Latattore Foundation and the University of Texas. WOW provides pap smears and mammograms at no cost to low-income/uninsured women through monthly community health fairs. Learn more about WOW at https://latattore.com/wow/.

“Members of the Hispanic community don’t always have health insurance, so WOW is helping to save peoples’ lives. I started as a volunteer and now I’m on staff,” said Juana.

Juana says she would participate in a clinical trial again, and that she would be more open to discussing related impacts. “We need to speak and let people know what’s happening,” Juana said.

When asked if she has any words of advice to individuals considering clinical trial participation, Juana advised the following.

“When you’re deciding about a clinical trial, read everything. Read every detail. Those little details will help you decide if you want to be part of it. And get a second opinion before you make your final decision.”

Sources:

(1)https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6745864/#:~:text=The%20incidence%20of%20pregnancy%20complicated,the%2012%20months%20after%20delivery

(2) https://www.cancer.net/navigating-cancer-care/how-cancer-treated/radiation-therapy/understanding-radiation-therapy

Medical Hero Story: Jackie Zimmerman, MS Patient Advocate

Jackie Zimmerman is an accomplished entrepreneur, marketing professional, former roller derby league president, and non-profit founder with a “can-do” energy that is immediately evident when you speak with her. She is also a patient advocate for individuals with multiple sclerosis, receiving the diagnosis during college, at the age of 21. In the face of this world-rocking news, Jackie powerfully pivoted, sharing her story with others and later, becoming a patient participant in clinical research.

“It was a total surprise – no one in my family has it,” Jackie said. “My first question was…am I going to die? I didn’t know anything about MS. And all the patient-facing documentation was targeted at older individuals.”

Jackie found this surprising, particularly when she learned that most patients are diagnosed in their twenties. Her response? It was the mid-2000s, so Jackie turned to one of the newest forms of digital communication, blogging.

“Initially, I started a newsletter and then it became a blog. This was before social media, so blogs were how you connected. Blogging got me on the scene of patient advocacy. There are lots of advocates, now, but then, there weren’t as many,” Jackie explained.

Jackie was diagnosed with relapsing remitting MS which first presented during a flare. At that time, the standard of care was injectable medications.

“Which was really scary at 21 – who likes needles?” Jackie said. “My doctor didn’t provide any guidance. He told me to pick whatever medication I wanted. Today, there are many different options and methods of delivery.”

Another factor complicating the treatment of MS is that in terms of symptoms, prognosis and reactions to medications, no two cases are alike.

Jackie first participated in a clinical trial in 2008 for a MS medication, but being in treatment concurrently for Inflammatory Bowel Disease (IBD) was skewing the results and after a short time, she was asked to withdraw from the clinical study. Over a decade would pass before Jackie would join another clinical trial.

During that time, Jackie founded Girls with Guts, a non-profit to support women living with IBD, and her role as a patient advocate scaled, which led to public speaking engagements as well as work with healthcare and pharmaceutical companies looking to connect with patients.

Two factors steered her back to clinical research as a healthcare option for MS.

“I asked my neurologist questions, because I wanted to keep abreast of things, particularly because I write about them as an advocate,” Jackie said. “Being part of a patient advisory board for a bio-pharma company was also a huge driver. I understand about clinical research participation and what it means. The only factor this second time was a consideration about the time commitment – it’s about a 25-minute drive away. The trial does offer transportation if you need, which I think is awesome, but I don’t need it.”

(COVID-19 has accelerated the adoption of virtual clinical trials and the use of digital devices to monitor patient progress. CISCRP recently conducted a survey on the impact of COVID-19 on clinical research. Access the report here).

When asked about other determinants in her decision-making, Jackie commented “I’m married, so my husband was involved. He said it’s my choice, but I considered him in the process, and all the things you think about when you’re involved in a partnership. I know how to talk with my friends and family about clinical trials to allay their fears. I know how to position it so as not to scare anybody.”

Jackie did not consult any patient advocacy organizations for guidance before participating.

“I’m in the minority here because I know a lot more about clinical trials than the average patient. I knew what questions to ask because I had been on a patient panel and participated in an FDA Patient Advocacy training. I’ve spent a lot of time learning about trials.”

The conversation then turned to what advice Jackie would offer readers considering clinical trial participation.

“Oh man, there’s so much advice,” Jackie replied, laughing. “I have so many angles. Mostly, don’t be afraid of them. It’s not a last resort for MS in terms of treatment. It’s a way to assist your community and get access to medications, years in advance. You’re so heavily monitored that the potential for anything going wrong is quite low.”

Jackie would consider participating in future clinical trials.

“Yes – as long as it fits into my life and it’s not an inconvenience or as long as the potential benefits outweigh the potential inconvenience. I know I have a lot of privilege – I can work from home and make my own schedule. If you’re looking at trials that may not fit into your life, know that there are pharma companies working around participant schedules with office and home visits. If it’s not feasible right now, it doesn’t mean that it will never be feasible.”

Medical Hero Story: Leah Crocker, Lupus Advocate

Lupus is an autoimmune disease that causes your body’s immune system to attack your tissues and organs. Difficult to diagnose, Lupus can remain dormant in an individual’s body, only to be “woken up” by an illness or major surgery. This was the case for Leah Crocker. In 2000, Leah had just undergone carpal tunnel surgery on both hands but wasn’t healing properly. At this time, her orthopedic surgeon suggested she consult a rheumatologist. Upon seeing a rheumatologist her blood work came back positive for Lupus.

A disease with no cure, Lupus is managed through treatments that help patients control their symptoms. Soon after her diagnosis Leah began experiencing numbness in her fingers. This issue was identified as Raynaud’s phenomenon, a common symptom of Lupus. Raynaud’s is a condition that results in the discoloration of the fingers and toes in response to cold temperature or stress. During this time, Leah was prescribed an anti-malaria drug to help. However, her condition would soon grow worse when she discovered that gangrene had set into two of her fingers. At the time she had a choice between amputation or chemotherapy. Leah chose to undergo chemotherapy, which she continued for several years.

Despite undergoing treatment for Raynaud’s, because of the severity of her condition her rheumatologist strongly recommended that she relocate to a warmer climate to reduce the chances of her condition worsening. For Lupus patients in similar situations Leah advises, “Know your limitations and live within them.” So, in 2007 she made the move from her home state of New Jersey to start a new life in Georgia. After relocating to Georgia Leah connected with a new rheumatologist Sam Lim at Emory University School of Medicine.

This is when her clinical trial journey began. Leah credits Dr. Lim for encouraging her to get involved in clinical trials. The first study she joined was The Georgians Organized Against Lupus study, led by Dr. Lim at Emory University in 2013. The goal of this study is to better understand the burdens of Lupus. Leah has been involved in this study for the past several years, participating in in-person visits once a year and completing an online questionnaire twice a year. Leah also participated in another trial for Raynaud’s in 2015. This trial was studying the effects of Botox on individuals with Raynaud’s. As part of the trial she was asked to hold her hands under cold water and receive Botox injections. Despite the challenging experience, Leah is happy to have participated in this trial.

An experienced clinical trial volunteer, Leah’s advice to those thinking of participating is, “Just do it.” At the time of her diagnosis there were fewer medications available for individuals like Leah. Today, thanks to clinical trial volunteers, there is newfound hope for the Lupus community. To find trials for Lupus in your area visit CISCRP’s Search Clinical Trials page. For more information about Lupus, treatments, clinical trials, community forum and other educational information, please visit www.lupusresearch.org

Medical Hero Story: Sandy Morris, ALS Advocate

On January 6, 2018, at the age of 51, Sandy Morris was diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS. ALS is a progressive nervous system disease that affects the nerve cells in your brain and spinal cord. The disease causes individuals to lose control of the muscles needed to move, speak, eat and breathe. According to the ALS Association, every 90 minutes someone is diagnosed with ALS and someone passes as a result of the disease. There is currently no cure for this debilitating disease. 

Sandy spoke candidly about the effects of ALS, “No one wants their body to trap them.” A mother of 3, she was determined not to give up hope. Following the advice of her best friend, she got involved in a clinical trial at the California Pacific Medical Center. As part of the trial, she had to undergo bone marrow extraction in order to retrieve stem cells which was followed by a series of infusions and lumbar punctures. Although the clinical trial involved invasive procedures, she describes her experience as an overall positive one. Regarding her participation Sandy stressed, “I would rather die trying. I don’t want to just accept my fate.” 

ALS affects everyone differently. Sandy explained, “How we progress is totally unique. I have some friends who can’t talk but can walk, and others who can walk but can’t talk.” For individuals considering participating in a trial, she stressed the importance of being well informed by researching the treatment being tested. Sandy shared her willingness to participate in future clinical trials and encourages others to educate themselves until ALS treatments and cures are found. She encourages others to get involved noting, “That’s the only way we’re going to move forward.” 

 There are currently four medications available to treat ALS. But more research remains to be done to find a cure. Despite ALS being a fatal disease, Sandy remains hopeful, “We just need a happy ending and we don’t have one yet.” Her advice for other ALS patients and their loved ones is to remain as positive as possible while learning to live with their disease, something she acknowledges is not an easy thing to do.  

Sandy discussed ways she wants to continue to make a difference including attending FDA meetings to share her experience and influence more efficient, humane clinical trial design. She also stressed the importance of pharmaceutical companies and patients working together to create clinical trials. Her goal is to create hope for the future. Sandy stressed, “I want to make sure that the next 51-year-old mother of three doesn’t have to hear she has ALS period. I want a comma, nothing finalized.” 

Medical Hero Story: Nurse Katie Klatt & COVID-19

At the beginning of the pandemic in mid-March, Katie Klatt, a nurse on a COVID-19 infection control team, received the news that she had contracted the virus herself. “I wasn’t too surprised,” Katie said. “I kind of knew, but the actual confirmation was a little bit scary. It was early on so no one in the US really understood how bad it was.” A healthcare professional, Katie’s background includes working as a PICU nurse and she had just moved to Boston to pursue her Master in Public Health at the Harvard Chan School. Now fully recovered, Katie is a patient participant in a COVID-19 antibody clinical study. This is her story.

Katie contacted her primary care physician when she started having symptoms. “I was treated in two different ways. The first week I was seen via telehealth, and that was literally the same week that so many medical professionals and patients were turning to that option. My doctor was retiring, so I didn’t really have anyone following me. The onus was on me to check in and report my symptoms.” At the end of the first week, Katie was advised to be seen in person, at an urgent care clinic. However, being symptomatic, she could only be seen at the urgent care if she was a previous patient. Being new to the area, this was not the case. Her only other option was to go to an emergency room.

“At first, I didn’t think I was sick enough to go to the ER. I didn’t want to take an Uber and infect anyone else and I was too tired to ride my bike. So I waited until the Tylenol kicked in and walked 40 minutes to the hospital. At the emergency room, they were really well set up. When I walked in, people started to call ‘Rule out!’ which means a COVID-19 patient is entering the area, so people started to move away from me as I passed by. After I was seen, Security escorted me out the back door to protect other patients and staff,” Katie said.

The hospital pharmacy was closed, so Katie was handed a paper prescription to have filled elsewhere. Even though she was wearing a N-95 mask her mother had sent to her a few weeks before she got sick, Katie realized that she should not enter a store. She was also concerned about handing the paper prescription to a pharmacy technician. Katie called a friend who met her at the pharmacy with a clear plastic sandwich bag. She dropped the prescription in it and her friend brought it inside and had it filled.

In addition to having COVID-19, Katie also had a sinus infection. When she was diagnosed, Katie knew what to do. “Stay at home, isolate, hydrate and rest,” Katie stated plainly. “As a healthcare provider, we tend to minimize our own complaints because we’ve seen so much worse, so my view of it was skewed. Having a 103 degree temperature for 10 days, it was almost like I got used to having the chills and feeling exhausted constantly.”

Katie socially isolated from her roommates, staying in her room and only entering the kitchen when they were not present. “I had the presence of mind, despite the high fever, to clean everything I touched – that’s from my nursing background. I’m happy to say my roommates didn’t get the virus.” Family and friends sent care packages and checked in with phone calls and texts which helped buoy Katie’s spirits.

A few days after starting medication, Katie began to rapidly recover. She attributes this, in part, to being a lifelong athlete, playing in Australian and Gaelic football leagues. “When I got COVID-19, I lost about 10 pounds in a week and I lost a lot of my fitness. When my taste started to come back, I was able to eat more and work towards regaining my fitness.”

Katie is using her experience with COVID-19 to assist others. “A friend of mine who is a nurse told me about a clinical study, so I registered for it. The purpose of the study is to monitor levels of COVID-19 antibodies present to see how long they last in a recovered patient’s body. It’s a two-year commitment.”  On a monthly basis, Katie’s blood is drawn and analyzed. Currently, she has not been notified of recent results and she hopes to be informed soon.

In her role as a nurse on the COVID-19 infection control team at Boston Emergency Medical Services, Katie shares her story with EMTs and paramedics who have been exposed to or have contracted the virus while treating and transporting patients. “This is an isolating disease,” Katie explained. “Not having a stigma attached to it is important. It helps them when I explain what I went through when I was sick.”

When asked if she is concerned about contracting COVID-19 again, Katie said “I probably should be. I have reached the same fatigue that everyone in the world has now, around COVID-19. It’s hard to maintain that level of high alert. But I am being careful, more for others than for myself. I wear a mask everywhere, even when I am running outside. I do it because I don’t want anyone else to get it.”

Katie cautions others to be just as vigilant. “Just because we’re opening up, it’s not over. Wear a mask to protect yourself and others. Keep talking about it so that people don’t forget.”

 

Medical Hero Story: Lee Giller & BRCA1

Clinical trials offer “cutting-edge treatments” and “another level of care”

For Lee Giller, participating in a clinical trial was the “best option” for his future and his children’s.

A business owner from Akron, Ohio, Lee was diagnosed with Stage II breast cancer in 2005 at the age of 48. Although Lee knew that men could get breast cancer, the diagnosis blindsided him. He’d assumed the lump on his left breast was a cyst, as he had a history of cysts. What’s more, as far as he knew, he had no family history of breast cancer.

When a dermatologist recommended he immediately see a surgeon about the lump, he remained unperturbed.  “Even the surgeon said, ‘I’m sure you are fine,’” he recalls. “Then he felt it, and I could tell from the look on his face that I wasn’t fine.”

Lee traveled to Boston where he underwent a single mastectomy. He returned to Akron for a regimen of chemotherapy and radiation and daily doses of tamoxifen.  Lee learned that his paternal grandmother had died from breast cancer and a genetic test showed he carried the BRCA1 gene mutation, as did two of his three children.

Despite the revelation, Lee responded well to his treatment and he was optimistic he could put his ordeal with cancer “in the rearview mirror.”

“Things were going along pretty well,” he says, but in late 2012 a routine scan found the cancer had come back and spread to his liver, bones and lungs.  “You get scared at that point,” he says. “You think you’re done with it and it comes back and it’s in other parts of your body. At that point I was willing to do anything.”

Lee’s wife, Kathy led the charge. She began searching for new doctors and alternative treatments. They consulted with doctors in Boston and Cleveland all of whom recommended participating in a clinical trial.

Kathy was skeptical. “My initial thought was that a clinical trial was your last line of defense,” she says. “But what we’ve really learned through all this is some of the most cutting-edge treatment is being done at the clinical-trial level.”

Lee signed up to participate in a double-blind placebo-controlled trial that involved treating participants with the BRCA1 mutation with either chemotherapy and an investigational agent called a PARP inhibitor and others with chemotherapy and a placebo.

Because Lee had recently sold his business, he and Kathy were able to travel to Pittsburgh every three weeks to participate in the trial. It was an arduous process: a two-hour drive, six hours of chemotherapy infusion, which would leave him feeling nauseous for a few days, capped by a two-hour drive home. In addition Lee took eight pills every day. Still, he says, “the care was tremendous. You seem to get another level of care when you’re participating in a trial, and you have more people watching you.”

Over the course of the next year Lee and Kathy made 16 trips to Pittsburgh. Quarterly scans showed his cancer was shrinking substantially. Unfortunately, during his 16th treatment, Lee experienced an allergic reaction to the chemotherapy.

“I started to itch all over,” he recalls. “They warn you that if that happens you have to tell them immediately because it can be life threatening.” Lee’s care team treated him with an antihistamine and he quickly recovered, but he had to withdraw from the trial as a result.

In the fall of 2015, roughly a year after he withdrew from the trial, Lee discovered his cancer had again spread, this time to his hips and bones. In early 2016 he was able to obtain the investigational PARP inhibitor on a compassionate use basis.

Looking back Lee says he’s glad he participated in the trial both for his own sake and for his children’s.

“I think it was my best option,” he says, but “I also have two children who have BRCA1 so anything I can contribute to science and to ending this disease I am happy to do.”

As for others who might be considering clinical trial participation, he offers this advice. “Talk to a wide range of doctors and feel comfortable about getting involved. Do as much research as you can. Once you feel comfortable, you should have no hesitation about getting into a clinical trial.”

Medical Hero Story: Kaamilah Gilyard, Lupus Warrior

Talking about a health problem can be difficult, but when the problem is an autoimmune disease that causes the body to attack its own tissues it can be just as hard to keep quiet. Kaamilah Gilyard, 35, was first diagnosed with lupus at 17, but has traced back signs of the disease starting as young as 12-years-old, including the tell-tale butterfly face rash. Despite spending much of her teenage years quietly wondering what was causing her frequent ER visits and extreme fatigue – skipping classes to take naps – she’s been speaking up ever since.

“I am a living, walking example of what lupus is, what it looks like, and how it can affect someone. I want people to see me pushing through and staying positive so that if they’re suffering they keep pushing too,” she says.

It all began after her doctor recommended against going to college. Kaamilah refused to let her life’s adventures end at 18, so she applied anyway and wrote her college admissions essay about lupus. She went on to study at and graduate from Penn State, all the while making speeches and writing essays for courses about the condition’s effect on her.

“I have a big mouth, so I figured I might as well use it for good,” she says.

Kaamilah continues to share her inspiring words at a wide range of conferences and public speaking engagements, including CISCRP’s AWARE for All – New York event, the Lupus Research Institute (LRI) Lupus Trials Fair, and even in a congressional lupus caucus. She’s also heavily involved with the Alliance for Lupus Research, sharing her story in online videos and captaining teams for the organization’s annual walk for the past 7 years.

Kaamilah candidly shares her experience in clinical trials with other “lupus warriors” and those considering trial participation. “No man is an island,” she explains, saying she participates in trials not only for her potential benefit but also for her friends, family, and the millions of strangers who could benefit from her participation, too.

Her reason for getting involved in her first clinical trial, which she calls a “bright star” of her ten years living with lupus, was to help “take back the power” of her body. In her speech given at the LRI 2014 Lupus Trials Fair, she encouraged other patients to do the same, saying “we may have lupus, but lupus does not have us.”

She entered that study after one of the worst flare-ups in her life, following her doctor’s recommendation to participate and admitting that she’d “try just about anything” to feel better. For the next 3 years, she participated by taking her assigned pill and attending site visits for check-ups with a physician; including two years in the ‘open-label’ portion, during which she knew she was receiving the study drug. Even though she felt some improvement, she eventually left the trial due to the onset of lupus nephritis, or kidney inflammation.

“Everything happens for a reason though,” she says; the trial was terminated shortly after she left due to a lack of efficacy, meaning the researchers couldn’t prove that the drug was helping participants more than the standard treatments available.

Behind everything she does to advocate, Kaamilah says, is hope—for less flare-ups, for more “good” days, for the opportunity to live a “normal” (lupus-free) life, and most-of-all for researchers to learn more and someday cure the disease.

Medical Hero Story: Kyle Bryant & FA

When Kyle Bryant was diagnosed with Friedreich’s Ataxia (FA), a rare, progressive neuromuscular disorder, at age 17, he knew he had to do something, so he did the thing he knew best: he got on his bike.

He spent the first few years after his diagnosis challenging himself to achieve new personal records in cycling, both as a way of coping and proving to himself that he could still do what he put his mind to.

By the time he was 26, after riding from San Diego, CA to Memphis, TN, Kyle’s passion became so much more. That’s when the idea for rideATAXIA, a program of the Friedreich’s Ataxia Research Alliance (FARA), got wheels of its own. Kyle began organizing rides to fund FA research for his organization that now has locations in five states and plans rides across the country.

“Hearing there’s no treatment or cure was a huge blow, so cycling and fundraising became our therapy— how we dealt with the disease and continue to deal with it,” Kyle says. And even though Kyle had to trade in his standard bike for a more handicap-accessible Catrike 700 model, it hasn’t slowed him down.

The same gumption with which Kyle started rideATAXIA also led him to begin participating in clinical trials. In his early twenties, Kyle volunteered for his first trial; and while the inpatient study required him to stay in a hospital bed and get his blood drawn up to four times a day, he didn’t mind.

He references a saying in the FA community that the cure to the disorder is a “puzzle” – all of the pieces are out in the world but it’s up to the community of researchers, patients, families, and supporters to put them together. Sitting in that hospital bed giving blood, Kyle says, was his piece of the puzzle.

Kyle continues participating in trials, trying out new drug and therapy treatments. And although his personal health doesn’t always improve, he always considers his participation valuable.

“There’s a chance that these drugs could be therapeutic for me, but that’s not why I participate. I participate because I want to push the science forward. There is no way to get these trials done without participants. Even if these drugs aren’t helpful for me now, it will help find something in the future,” he says.

Participating in research gives Kyle hope, not only for himself but for future treatments and a potential cure for the disease that he’s built his life around fighting.

And he’s fighting alright— saying moderation “keeps us from reaching the extreme points of our potential.” And for someone who uses a wheel chair but still bikes cross-country and works out in a gym, he means it.

Already this year, he has biked up Mt. Evans, the highest paved road in the U.S., and says a European cycle tour could be next. As for clinical research, he will continue placing his piece in the puzzle, one rideATAXIA fundraiser and clinical trial at a time.

For more information about Friedreich’s Ataxia and rideATAXIA, please visit www.curefa.org.

To learn more about Kyle’s story, visit his website at www.kyleabryant.com.

UPDATE, January 2016: Kyle is honored and excited to be speaking at the third annual 2016 Patients As Partners conference in Philadelphia, PA this March. He will be speaking on a panel about patient networks and support programs. To hear from Kyle, along with other patients and clinical research professionals, register for the 2-day conference by visiting the Conference Forum webpage for more information.

Medical Hero Story: Jonathan Sari & MS

Clinical research participants have myriad motivations. They seek relief from pain. They want to help future generations. They want to fight back against their diseases.

Jonathan Sari says his reason for participating in clinical research is more fundamental: it is his only hope.

Jonathan, a video game developer, first realized something was wrong on a beautiful summer day in 2003 at the age of 33. He’d taken a short hike with friends near his home in Walnut Creek, California, when his legs gave out beneath him.

“I couldn’t stand,” he recalls. “It wasn’t as if my legs were just tired or my muscles were sore. My legs wouldn’t hold me. I fell down and couldn’t stand up until I had rested. It was clear something was wrong.”

Doctors conducted numerous tests, but it was more than a year before Jonathan was diagnosed with multiple sclerosis (MS), a disease in which the immune system attacks the myelin sheath and nerve fibers of the central nervous system. Over time Jonathan’s condition steadily deteriorated despite medication. It became apparent his disease was not following the typical relapsing–remitting pattern of MS, but the far less common primary-progressive course.

Because, he says, “there are no really good mediations for progressive MS right now and the medications out there have really problematic side effects,” Jonathan was eager to participate in clinical research. Unfortunately, most MS research is directed at the relapsing-remitting variation. What’s more progressive MS is difficult to study. Because the rate of decline can differ dramatically from one individual to the next, researchers must study a large group of patients to establish whether or not an investigative treatment has slowed the disease’s progression.

Still, Jonathan has sought out trials where ever he can. He participated in a 10-year longitudinal study to identify genetic markers of the disease and in two trials studying investigative treatments.

The first trial was a placebo-controlled study investigating the effectiveness of fingolimod, a drug used to treat people with relapsing-remitting MS. For almost a year Jonathan underwent frequent MRIs, physical tests to determine his strength and coordination, and cognitive tests to assess his brain function, but he ultimately withdrew from the trial because his condition continued to deteriorate. He still doesn’t know whether he received the investigative drug or the placebo.

Roughly a year later he signed up for a Phase 1 trial that was attempting to regrow myelin, the fatty material that insulates nerves and enables them to conduct impulses between the brain and different parts of the body. Jonathan received a one-time IV infusion of a new antibody. Because he was one of the first participants to undergo the treatment, the dosage was very low and researchers monitored his reaction around the clock for 48 hours.

While participating in the earliest stage of human research might give some pause, Jonathan embraced the opportunity and hopes to participate in future research that might involve myelin regrowth. He is also on a long waiting list to participate in a stem cell trial.

For him, clinical research is life.

“I was excited and glad to participate,” he says. “It’s quite hard to find trials for progressive MS and because my disease has progressed so far, I’m not a candidate for most trials,” he says candidly.

Today, Jonathan lives in Seattle. He is confined to a wheelchair having lost functional movement in his legs and hands. If he wants to be heard he must rely on a ventilator. He knows time and his disease are working against him, and so he continues to search for clinical trials that may help him slow their relentless progression.

“I just wish we could simplify and streamline the process for getting these trials done. I only have so much time left,” he says. “For me it’s a race against the disease.”

Medical Hero Story: LuAnne Bonanno & Defeating Diabetes

There’s very little a worried soon-to-be grandmother can do to safeguard the health of her expectant daughter and her unborn grandchild, but LuAnne Bonanno was determined to do what she could.

So when LuAnne’s oldest daughter was diagnosed with gestational diabetes early in her first pregnancy, LuAnne decided it was time to take action against the disease that she herself had struggled with for decades. Her plan: participating in a clinical trial.

For LuAnne, a 56-year-old farmer in Methuen, Mass., the memory of her own diagnosis with diabetes is still vivid. “I remember being diagnosed with gestational diabetes and seeing those red letters on my chart saying, ‘High-risk OB’,” she says. “At that point you’re not just worried about yourself; you’re worried about your child. When my daughter was diagnosed, I felt that way all over again.”

During each of her three pregnancies LuAnne developed gestational diabetes that required as many as five shots of insulin each day. While the disease abated after she gave birth to her first two daughters, it developed into Type 2 diabetes after her third daughter was born.

For the most part LuAnne says her diabetes has been manageable. For years she has been able to manage her condition with a single dose each day by watching her diet and staying active.

Consequently, although she helped organize charity walks to raise funds and awareness about diabetes, LuAnne says she never felt compelled to participate in a clinical trial until her daughter was diagnosed.

At that point, she says, she began searching for ways to help. “I kept asking myself, ‘Is there anything I can do to help her or make this easier for my grandchild?’ I guess this was my way of doing something.”

LuAnne was accepted into her first clinical trial, which assessed the impact of salt levels on kidney function in diabetics, in 2011. The two-month study required her to eat a special diet, which alternated between high salt and low salt, and to spend two nights in a Boston hospital. During the next two years she signed up for three more trials. One tested the impact of high- and low-salt diets on diabetics’ blood pressure. Another was designed to study sleep apnea in diabetics, but LuAnne’s participation was brief, because she did not meet the study criteria. A third trial was designed to assess the impact of a diabetes medication on blood vessel function.

All the studies required LuAnne to make a one-hour round trip drive into Boston. Sometimes she needed to eat special diets, have frequent blood draws or spend a night or two in the hospital. But participation incentives offset the inconveniences, she says. She is financially compensated for her participation, her parking in Boston is paid for, and the study sponsors provide any special foods she needs during the course of the trial.

What’s more, she says, “I get a real sense of satisfaction out of it. I’m not a scientific person but participating makes me feel more scientific and analytical, and I get the sense I am helping others. I may just be subject No. 8234, but in my mind I know I am helping.”

Today LuAnne is a proud grandmother – her daughter gave birth to a healthy baby boy soon after LuAnne completed her first trial – and she is eagerly awaiting the births of two more grandchildren. Because her two pregnant daughters have both developed gestational diabetes during their pregnancies, LuAnne says she’s eager to find another trial in which to participate.

“I like to think that I am having an impact and that I am contributing to the overall understanding of diabetes,” she says.