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.

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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.”

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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.

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Medical Hero Story: Jameisha Brown & Burkitt’s Lymphoma

Eight-year-old Jameisha Brown may not have known the clinical terms for her cancer or its treatment, but thanks to her innate curiosity and the frequent, simple explanations of her care team, she understood her adversary.

That understanding empowered her, she says. Cancer wasn’t a nameless, faceless monster. It was a disease that clinical research would help her fight.

“Meisha,” as friends and family call her, began her battle with cancer in June 1998 during the summer after second grade. She’d lost her energy and had begun vomiting.  Her mother took her to the pediatrician who felt a mass in her abdomen and immediately ordered tests. Within hours Meisha was diagnosed with Burkitt’s lymphoma, a rare, aggressive form of non-Hodgkin’s disease typically found in children.

Just three days after diagnosis, Meisha underwent emergency surgery at M.D. Anderson Cancer Center at the University of Texas. More surgeries and chemotherapy followed.

The doctors, nurses and residents caring for Meisha explained the situation to her. They described her cancer, demonstrated procedures on a teddy bear and drew pictures on a dry-erase board. “They used Clifford books and my Barney puppet to explain the various types of chemo and what the colors meant,” she says. Although her understanding was child-like, it was comprehensive. “I learned about platelets, transfusions, nutra cells and what type of blood I was getting. I think I understood everything about cancer from a child’s perspective maybe even better than my parents did.”

After three months of standard-of-care treatment, Meisha continued to struggle. Her doctor wanted to start her on a combination chemotherapy regimen that had proven successful in adults, but was not yet approved for use in children. As always, her care team took the time to explain everything to her and her parents.

“I knew it was research because it wasn’t talked about in the same way as the other drugs,” she recalls. “The doctors weren’t saying, ‘we can expect this,’ or ‘this has been proven with that.’ With this treatment they were saying, ‘We hope.’ It gave me a sense that I had a fighting chance because there was the word ‘hope’.”

For roughly seven months, Meisha endured a regimen that included rituximab, cyclophosphamide, hydroxyldaunorubicin, oncovin and prednisone (R-CHOP). Her hair and eyelashes fell out, her joints ached and she was exhausted. At one point she developed a septic infection in her chemo port that sent her to the intensive care unit. She spent several weeks on life support.

Despite the pain, Meisha fought, and in 2000 she was declared cancer free.

Today, Meisha, now 24, is working toward a master’s degree at Texas Woman’s University College of Health Sciences and works as a clinical research coordinator at Texas Children’s Hospital in Houston. She continues to participate in clinical research, but now she does so as part of a long-term study of pediatric cancer patients that is being conducted by St. Jude Children’s Research Hospital. The R-CHOP regimen she helped pioneer has become a primary and effective treatment for Burkitt’s lymphoma and a wide range of other B-cell non-Hodgkin’s lymphomas.

Meisha says she’s living proof of the power of clinical research. She credits her care team’s empathy and commitment to communication with helping her persevere throughout her battle with cancer and advises anyone thinking about participating in clinical research to “understand the risks and make sure your questions are answered.”

She also advises them to think broadly about the benefits of research. “Do not just decide to participate because of the potential that it might effectively treat your illness,” she says, “but because of the countless others that may have to fight the same fight.

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Medical Hero Story: Pat Erickson & Parkinson’s Disease

Pat “Pinky” Erickson calls herself a “doer.”

Dynamo is more like it.

So when Pat, 57, was diagnosed with Parkinson’s disease 12 years ago, she went into overdrive.

Determined not to let Parkinson’s define her, the mother of three and PTA president at first hid her diagnosis from friends. But as her condition progressed, hiding it became more difficult. Eventually Pat came to realize the wisdom of her husband’s insight: “If any good is going to come of this, I was going to have to start telling people.”

So on the night before a three-day charity walk, Pat shared her secret with her friend Marla. By morning the two had planned their first fundraiser – a vintage fashion show – and the seeds of Pinky’s Passion for a Parkinson’s Cure were planted. Since 2007 the not-for-profit has raised $235,000 for Parkinson’s research.

But Pat doesn’t just raise money for Parkinson’s, she’s put herself on the line in three trials to help researchers better understand the disease.  The first study required a single blood draw. In the second she had to take a two-hour cognitive function test. She’ll take another test in a few years and researchers will compare results of the two.

The third study, which required five or six clinic visits, was the most difficult, she says, because she had to stop taking her medication for several hours so researchers could measure the effectiveness of an experimental rescue drug.

Pat takes half a dozen pills every 2.5 hours. Without the medication, her limbs stiffen. “I feel like the tin woodsman from the Wizard of Oz.”

Going without the medicine was “miserable.” At the clinic Pat had to blow into a spirometer over and over again to test her lung function. The test made her feel dizzy and sick.

“At one point I told my husband I didn’t want to do it anymore. I wanted to give up. He said, ‘OK, but think about why you’re doing this in the first place.’”

Pat persevered.

“When you have a chronic illness it’s hard not to let the illness take over your life,” she says. “This is my way of fighting back. I want to make a difference so that someone else doesn’t have to have this disease, so that we can find a medication.”

While Pat’s an advocate for clinical research, she wants people to understand what’s involved. Her advice to people considering trial participation?

“REWARD,” she says simply. REWARD is Pat’s acronym for:

–          Read everything so you know what’s going on.

–          Every study is not for everybody. Wait for the one that’s right for you.

–          Wear comfortable clothing. You’ll feel more relaxed.

–          Act as your own advocate or have someone with you to be your advocate. Speak up if you have a concern.

–          Remember why you are doing this.

–          Do keep a sense of humor.

That last bit of advice helps a lot in life as well, she notes. “If you can find something funny in a situation it will help you get through it.”

To search for medical conditions in a specific location visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.