Solving the Puzzle of IBD
Thirteen-year-old Alyssa Zaffiro has Crohn’s disease, a chronic illness in which the intestines become inflamed and ulcerated. Crohn’s is part of a group of diseases known as inflammatory bowel disease (IBD).
Since her diagnosis at age 9, Alyssa has formed close relationships with her treatment team at Cleveland Clinic Children’s. As a way of thanking them, she decided to raise funds for IBD research at Cleveland Clinic. Her mom, Lori Zaffiro, discovered Cure for IBD, an online nonprofit organization based in New Jersey, which hosts individual fundraising webpages with 100 percent of the contributions going to approved IBD research centers.
But she noticed that Cleveland Clinic wasn’t on the list of approved centers.
Chris Pedicone, who founded Cure for IBD because his son has the illness, wasn’t familiar with Cleveland Clinic’s research. After seeing Alyssa’s suggestion, the organization’s scientific advisory board reached out to Cleveland Clinic to learn more about its IBD research.
“Our board was impressed with the broad number of projects, and we’re happy to now be a partner,” he says. “As an organization, our focus is on funding research that will develop new therapies – and potentially new cures – rather than improving existing treatments. We want to push forward with new ideas.”
The scientific advisory board at Cure for IBD was particularly impressed with the work of Christine McDonald, PhD, of the Department of Inflammation and Immunity at Cleveland Clinic’s Lerner Research Institute. “Her focus on the microbiome and the genetic and dietary factors that play into it is a key area, moving forward,” Chris says.
Figuring Out the Tipping Point
Dr. McDonald has been studying IBD for 11 years.
“It’s not a simple disease,” she says. “It runs in families. However, just because your parents have it doesn’t mean you will. Other factors, such as where you live, what you eat, what microbes you’ve been exposed to, if you played in the dirt as a child – also go into who develops the disease and who doesn’t. Often you’ll have siblings, or even twins, where one has it and the other doesn’t. For me, that’s really intriguing because it’s a puzzle. Trying to figure out the tipping point for those who develop disease versus those who can stay healthy is really fascinating.”
Dr. McDonald’s work is focused on analyzing the balance of beneficial and harmful bacteria in the intestines. Her program examines what happens when this bacterial balance is out of sync, and how an imbalance may lead to an overactive immune response against the microbes and, ultimately, IBD. Her research also investigates how genetic and dietary factors promote Crohn’s disease, and whether correcting bacterial imbalances could offset some risk factors.
Crohn's disease most commonly affects the lower part of the small intestine, although it can occur in any part of the large or small intestine, stomach, esophagus or even the mouth. It can start at any age, but most commonly is diagnosed in people between the ages of 15 and 30.
The disease can interfere with the normal function of the bowel in a number of ways. The bowel tissue may swell, thicken or form scar tissue, which can lead to blockage of the passageway inside it. Patients can develop ulcers involving the deep layers of the bowel wall and even may lose the ability to absorb nutrients from digested foods.
Unexpected Support
Within a few months, Alyssa had raised nearly $1,000 for Dr. McDonald’s work through Cure for IBD’s website. In addition, another Cleveland Clinic IBD patient, Susan Adams, also was raising funds for IBD research through the website, but not specifically for Cleveland Clinic.
“I’ve been making the nearly four hour drive from to Cleveland Clinic since 2012 because of the quality of care I receive there,” Susan says. “As a patient, I’m more than just a number and my doctors have become like family.” She says her experience has even inspired her to enroll in nursing school.
Both Alyssa and Susan were surprised when Cure for IBD added unallocated funds to support their gifts, directed toward Dr. McDonald’s research at Cleveland Clinic – bringing the total to $20,000. The organization since has made an additional $10,000 gift to Dr. McDonald’s lab.
Alyssa’s mom, Lori, also is pleased with the unexpected support. “It’s wonderful seeing it help the doctors and nurses who helped my daughter.”
After the $20,000 check presentation, Dr. McDonald gave Alyssa and Susan a tour of her lab, where she told them about the different projects she and her team are working on.
Susan says the lab visit caused her to want to increase her fundraising goals for 2018. “I thought the lab was pretty fantastic,” she says. “It seems every time I turn around, a new medication has been found or a new connection – and that all boils down to research.”
“It hadn’t occurred to me until I saw the lab that medical research is so involved,” Alyssa says. “I knew it wasn’t black-and-white easy, but I didn’t know it was so complex.” She believes that someday, a cure will be found because of research like Dr. McDonald’s. Although she says science is not her favorite subject, Alyssa someday would like to work in the field of gastroenterology because of all the doctors who have helped her.
Every Little Bit Helps
Dr. McDonald says she is inspired when meeting patients like Alyssa and Susan. “These are people who are taking the initiative to try to do something to help find a cure. They’re out there organizing fundraisers and educating others about their disease. It reminds me why we do the research.”
She emphasizes that philanthropy is essential to keeping her lab staffed and productive. “Without doing research, we’re not going to find ways to help people who have disease. We’re able to continue investigating diet and microbial imbalance, thanks to generous donors who keep us moving forward,” she says.
“Every little bit helps us answer another question.”
How to Help
Your support of research like Dr. McDonald’s will help solve the puzzle of IBD. For more information and to make a gift, contact Amanda Hollis at 216.445.6230.
Memorial Gift Invests in Women’s Health
When her mother died of a heart attack in 2014, Trina Bediako’s world was shattered. Only three weeks earlier, her parents, Jonnie and Tilmon Brown, had returned from a cruise celebrating their 50th wedding anniversary.
“We were blessed, and our business was thriving,” says Mrs. Bediako, President of New Horizons Baking Company. It was this good fortune that led her parents to establish the T. & J. Brown Family Fund in 2003, which supports programs that serve the community. When her mother passed away, Mrs. Bediako became a fund trustee.
In that role, she helps her family define their philanthropic priorities. She says that her intention is to honor her mother’s memory while addressing the needs of the community.
For her, and for her family, Mrs. Bediako says, “philanthropy is about so much more than writing a check.” It also means volunteering and being passionate about what they support. Recently, she, her sister and nieces volunteered for a community fitness challenge at Cleveland Clinic Langston Hughes Community Health and Education Center.
“We had a wonderful time,” she says. “We need centers like Langston Hughes in the community. The people who came through those doors were so comfortable in that space. There is camaraderie and competitiveness, as in the fitness challenge. We look forward to doing more in the future.”
In 2017, the family committed to making a $1 million gift to the Cosgrove Transformation Fund at Cleveland Clinic. A portion of the gift supports Celebrate Sisterhood, which is an annual multicultural women’s health and wellness event.
“I thank Trina for supporting Celebrate Sisterhood,” says Linda Bradley, MD, the event’s founder and Chair. She also is a gynecologist and Vice Chair of Cleveland Clinic’s Ob/Gyn & Women’s Health Institute.
“These dollars are precious, and we appreciate the gift and will use it responsibly for activities to educate, empower and help women be effective leaders in our community,” Dr. Bradley says. “The return on investment of this significant contribution multiplies because when women attend our event, they leave better educated and empowered.”
The family’s gift also is advancing development of a mobile app for cardiac rehabilitation. The project is headed by Leslie Cho, MD, Director of Cleveland Clinic’s Women’s Cardiovascular Center and holder of The Karos Family Term Chair in Women’s Cardiovascular Research.
“People with heart disease, those who have had bypass or stent surgery, a heart attack or a stent, would live longer if they participated in a cardiac rehab program,” she says. “Yet, these are the most underutilized programs – only 30 percent go for rehabilitation after open heart surgery, and only 15 percent after a heart attack or stent. Usually, it requires going to a hospital three times a week for three months. This is why we are developing an app that people can get for free and that will allow them to do their rehab at home.”
According to the American Heart Association, cardiac rehabilitation reduces deaths by 28 percent, as well as reducing recurrent heart attacks and symptoms and lowering blood pressure and cholesterol.
In addition to the app, the gift will be used to help raise awareness about heart disease in women, Dr. Cho says.
“I’m truly grateful for this gift,” she says. “We have an incredible need for cardiac rehab that is not being met. The national Centers for Disease Control has made increasing the use of cardiac rehab one of its goals for 2020.”
Mrs. Bediako says she, her husband, Gabriel, and all generations of her family are happy to be making a difference in the community.
“We believe that to whom much is given, much is required,” she says. “We believe that we are responsible for helping others.”
New Study Focuses on Dementia with Lewy Bodies
Discovered in the early 1960s, Dementia with Lewy Bodies (DLB) is finally getting some attention. For more than 50 years, “it was pretty much ignored,” says James Leverenz, MD, of Cleveland Clinic’s Lou Ruvo Center for Brain Health. And, when it’s not ignored, it’s often confused with Alzheimer’s or Parkinson’s disease.
That’s about to change. The National Institutes of Health (NIH) recently awarded a $6 million grant to Cleveland Clinic to establish a national research consortium focused on improving the diagnosis — and understanding the cause — of this neurological disorder.
Dr. Leverenz, an expert in DLB, is the lead investigator for the project. DLB is the second most common form of neurodegenerative dementia after Alzheimer’s. Affecting more than a half-million patients, it leads to a progressive decline in thinking, reasoning and independent function.
Diagnosis and Detection
The five-year grant supports a multi-center study aimed at finding DLB biomarkers that can assist with diagnosis, detect disease progression and ultimately measure response to treatment. “We want to find ways to identify higher-risk patients as early as possible and link them to appropriate treatments,” Dr. Leverenz says.
Through the new consortium, researchers from nine sites will collect clinical information, brain imaging scans and biological samples from more than 200 patients. This work will have the secondary benefit of developing an ongoing repository of samples for other studies and facilitate access to clinical trials for participants. The consortium will receive additional funding from the Lewy Body Dementia Association to fund an annual meeting of investigators to foster data sharing, collaboration and discovery.
“Lewy bodies,” the abnormal microscopic deposits linked to DLB, are named after Friedrich H. Lewy, MD, the neurologist who first observed them in 1912. Interestingly, he had trained just a few years earlier in Dr. Alois Alzheimer’s laboratory. Lewy bodies also are found in other brain disorders such as Alzheimer’s and Parkinson’s diseases.
DLB may be best known in connection with the late actor-comedian Robin Williams. After his suicide in August 2014, his widow revealed that he had been diagnosed with the disorder.
“Core” symptoms of DLB include changes in thinking and reasoning, visual hallucinations, motor symptoms similar to those seen in Parkinson’s disease (“parkinsonism”), acting out of dreams at night (REM sleep disorder), and day-to-day fluctuations in these symptoms.
How You Can Help
Your support helps us develop new ways to predict, diagnose, treat and – one day – cure cognitive disorders. For more information or to make a gift, contact Kristie Burke at 216.445.9412.
New Leader Delivers First State of the Clinic Address
“We are One Cleveland Clinic across the globe: A powerful team of 57,000 caregivers, ‘leaning in’ to every task,” said CEO, President and Morton L. Mandel CEO Chair Tom Mihaljevic, MD, in his first State of the Clinic address on Feb. 28.
“We are defined by our ability to provide exceptional care in an exceptional way,” Dr. Mihaljevic said. “As an integrated healthcare system, we will deliver uniform care – and the safest care – to every patient, every day at every Cleveland Clinic location, regardless of geography.”
The State of the Clinic presentation highlighted the successes of 2017 and revealed new initiatives for 2018. Dr. Mihaljevic, who began his tenure on Jan. 1, started his address by praising the work of his predecessor, Toby Cosgrove, MD.
Learn More About This Year's State of the Clinic
“The achievements of 2017 reflect the legacy of Dr. Toby Cosgrove,” Dr. Mihaljevic said. “He served Cleveland Clinic for more than 40 years – as cardiac surgeon, department chair, and CEO and President. He transformed Cleveland Clinic in more ways than we can count. He leaves us well-positioned for future growth.”
Under Dr. Cosgrove’s leadership, Cleveland Clinic saw increases in revenue, patient volume, research funding and community benefit:
- Operating revenue increased 5 percent in 2017 to $8.4 billion, while net operating income reached $328 million.
- The number of patient visits rose 7 percent to 7.6 million in 2017, thanks in part to improved access – new urgent and Express Care centers, virtual visits, shared medical appointments and same-day appointments.
- Research funding rose 4.6 percent to $272 million, including a 5.9 percent increase in NIH funding to $108 million.
- In 2016, Cleveland Clinic provided $809 million in community benefit – a 17 percent increase over the year before, representing over 10 percent of the health system’s operating expenses.
“Care for patients requires that we care for our communities,” Dr. Mihaljevic said. “Our roots in this region go deep. We’ve been on the same corner of Euclid Avenue for almost 100 years. Cleveland is in our name.”
Cleveland Clinic committed almost $400 million of its community benefit to subsidize care for patients in need, while also supporting research and education, community outreach, and neighborhood education programs such as the annual Minority Men’s Health Fair. Other examples are the Louis Stokes Scholars program, which will double the number of high school interns next year, and the educational partnership between the Ohio University Heritage School of Osteopathic Medicine and South Pointe Hospital, which will help alleviate a critical shortage of doctors in underserved areas of Ohio.
Looking ahead to the remainder of 2018, Dr. Mihaljevic announced initiatives to improve patient safety and reduce caregiver burnout:
- Patient safety: “We will continue to strengthen our culture of safety and to become an ultra-high reliability organization,” Dr. Mihaljevic said. “We will set bold goals. Hospital-acquired infections and serious safety events should never happen – we will bring those to zero. And we will become the safest place in healthcare, anywhere.”
- Office of Caregiver Experience: This new office will reach out to every Cleveland Clinic institute, hospital and location, working with caregivers to identify opportunities for improvement such as wellness, burnout and career development. It will focus on making Cleveland Clinic the best place to work “for everyone – regardless of race, gender, sexual orientation, national origin, socioeconomic status, or position in the organization,” Dr. Mihaljevic said.
In 2018 and beyond, Cleveland Clinic will continue to offer its model of medicine to more people in more places.
“It is our ethical obligation to care for as many people as possible, and our duty to grow responsibly,” Dr. Mihaljevic said. “The quality of Cleveland Clinic care transcends geographic and cultural boundaries.”
He noted that in 2021 – Cleveland Clinic’s centennial – a 200-bed hospital will open in London, marking “a remarkable journey: from a four-story outpatient clinic on Euclid Avenue to the backyard of Buckingham Palace.”
Dr. Mihaljevic pointed out that Cleveland Clinic’s international growth helps people around the world and right here in Northeast Ohio.
“Everything we do internationally comes back to Cleveland,” he said. “We have made the name of our city synonymous with advanced healthcare. Our overseas expansion provides resources that come back to our communities and give us access to previous untapped talent in healthcare.”
