Rare Leader: Lisa Bonebrake, Executive Director, Alport Syndrome Foundation
March 25, 2021
Name: Lisa Bonebrake
Title: Executive director
Organization: Alport Syndrome Foundation
Social Media Links:
Disease focus: Alport syndrome is a rare kidney disease that is genetically passed down in families from parents to children, though sometimes it can occur spontaneously and you might be the first one in your family to have it. The current goal of all treatment is to help slow progression of Alport syndrome so that patients keep their “native” kidneys as long as possible. Blood-pressure lowering medicines are often prescribed for this reason, even if patients don’t have high blood pressure. ACE and ARB medications–Lisinopril, Ramipril and Losartan—are proven to slow the spill of protein into the urine, slowing the scarring of the kidneys. Current research is in process to more fully understand the disease, identify more treatment options and a potential cure. Several human clinical trials in process as well. The disease causes kidneys to decline in function over time and frequently results in hearing loss and/or vision abnormalities. It’s estimated to affect 1 in every 5,000-10,000 people, which means that approximately 30,000-60,000 people in the United States are living with Alport syndrome.
Headquarters: Scottsdale, Arizona
How did you become involved in rare disease: My family’s whole world shifted when my son was diagnosed with Alport syndrome at age 11. He had been misdiagnosed as a toddler with a different kidney disease, but when he lost his hearing at age 11, this symptom led to his accurate diagnosis. My own misdiagnosis after almost 50 years then became clear to me. I began by reaching out to Alport Syndrome Foundation to volunteer, leading eventually to working for the organization full time. As I became more active in legislative advocacy, it became evident quickly that there are thousands of rare diseases, millions of rare disease families, and that our best chance of unlocking interest, funding, and equity in healthcare required all of us to collaborate and amplify our voices together.
Previous career: I worked in arts education for many years in Michigan, Chicago, and then San Diego, and spent some time also working at Northwestern University’s J.L. Kellogg School of Management so that I could audit their non-profit management courses at night. I knew I would always be working for non-profits, and that I’d never receive a salary that would allow me to afford tuition or loans for graduate school, so working at the university provided an extraordinary learning experience for me, as well as excellent connections and relationships in the non-profit community there. By the time I began working for Alport Syndrome Foundation, I had more than 25 years of experience in working for non-profit organizations from grassroots organizations to universities and museums.
Education: B.A. in communications and a minor in arts education from Michigan State University.
Organization’s mandate: Alport Syndrome Foundation’s mandate, or mission, is to improve the lives of people living with Alport syndrome through education, empowerment, advocacy, and directly investing in research.
Organization’s strategy: I credit the organization’s effective strategy to its co-founder, Sharon Lagas, who currently remains on our board. She and her fellow board members began by finding as many patients and families as possible, connecting them to each other, and building a database so communicating effectively and efficiently became possible. They attended important, high level meetings for nephrologists and researchers to make them aware of the needs of Alport patients, and of the organization’s goals. Together, they created a medical advisory board of clinicians from across the country, enlisting their support for driving research and designing a research program that brought new minds and interest to Alport research. This changed the research landscape, which then brought pharmaceutical interest due to an understanding of an engaged patient community. I admire the effective strategy that Sharon and her family and the original ASF Board Members brought to ASF. I feel honored to carry that torch and keep building on that strategy.
Funding strategy: Alport Syndrome Foundation is fortunate to have the financial support of patients, families, and their friends, who contribute to our annual campaign, and to our research program. In recent years, we are grateful to have developed important partnerships with pharmaceutical companies that value the work we’re doing to educate and empower patients, and to educate the medical community about Alport syndrome and the need for early and accurate diagnosis. We have developed sponsorship opportunities for companies to partner with ASF. In the end, there are only two of us on staff, so we don’t have a great deal of time for big fundraising efforts. At this point, our approach is to pay attention and understand the patterns and needs of patients, and to do our best to provide the kinds of information, support, and connection they need, as well as work with experts to invest wisely in research that will make a difference for patients—and if we do our jobs well, the community will respond to that by supporting our organization.
What’s changing at your organization in the next year: A few important changes are already underway. The first is that we established an Emerging Leadership Council of Alport patients ages 25 to 35. Their role is to help us address the needs of patients in this age group in particular. Patients of this age are often experiencing disease progression, need to leave their parents’ insurance, and are making career and family planning decisions that are informed by living with Alport syndrome. And, this group will serve as the next set of leaders for Alport Syndrome Foundation.
The other change underway is our research program. After 10 excellent years of funding research through an annual competition that included LOIS, full proposals, and NIH review style peer review with our Medical Advisory Committee, we put that program on hold this year. Instead, now that ASF has helped build a landscape of researchers and experts, many of whom are now collaborating and working together—we have chosen to target our research funds instead of funding whatever is the best of the proposals that come to us. We are now aware of where the gaps in research are, what is understudied and meaningful to patients, and who the experts are that can help best answer these questions. It’s an exciting next step in investment research for ASF and the patient community.
Management philosophy: I’m not sure it’s a philosophy, but more of a simple perspective based on personal experience. Working in non-profit and/or in a rare disease in particular is about passion and commitment. None of us are in it for a paycheck. For those of us working in these fields, we need to find ways to sustain our passion and commitment without burning out. I find the best way to do this is to listen to those on the front lines of the work we’re doing; remain open to new ideas on how to get something done; allow others to take on all kinds of responsibilities so they can learn and become increasingly valuable in the organization; and give authentic credit to those who are doing the hard work.
Guiding principles for running an effective organization: Hire well, collaborate often and openly with strategically vetted and trusted partners, and set the tone by authentically speaking and acting respectfully toward your colleagues, board members, and audience you serve at all times. In a rare disease organization, always put patients’ best interests in everything you do, and don’t underestimate what you and your organization can do.
Best way to keep your organization relevant: Keep paying attention to important measurements that show potential changing patterns. Are more people joining you or tuning out? Are all age groups using the forms of communication you’re currently using to communicate with your audience? Keep asking questions and measuring what’s important. Don’t stop listening to the needs of your core audience.
Why people like working with you:
I really have no idea. The only thing I can say is that in every organization I’ve ever worked for, including this one, no task ever seemed too insignificant or “out of my scope of work.” I feel like if you work for a non-profit, you should understand that you’ll wear many hats. And that’s not a bad thing. I would never ask my colleague to take on something that I would never do myself. If the bathroom needs to get scrubbed clean at the conference room where you’re holding an event and the facility janitorial staff is not available when you need them—then clean the darn bathroom, which is what I did at our last family meeting. If there’s work to be done, then do it. I think the colleagues I work with now and in the past understand this about me and are willing to jump in and do these things with me.
Mentor: I have had a variety of mentors along the way in my various jobs. In my role at ASF, I would have to say that I try to follow the role model that co-founder Sharon Lagas established when starting the organization. She always picked up the phone to talk to patients whenever they called, and answered their emails as quickly as possible. She treated them like family because we really do feel like family as we share this rare disease. We understand each other’s heartaches, fears, and hope. Sharon picked up the phone and walked me through it when my son was diagnosed. I try to always do the same, and set aside the crazy deadlines and stacks of paperwork when a patient calls. It’s why the organization exists, and it’s how we can directly help families.
On the Job
What inspires you: Creative minds inspire me. Whether it’s in science or in the arts—when a creative mind helps us see problems and solutions in new ways.
What makes you hopeful: In my role at ASF, I have the rare and unique opportunity to communicate with some of the world’s leading scientific researchers in Alport syndrome and other kidney diseases. Many of them are so incredibly brilliant, but they are also so humanistic and empathetic and dedicated to finding potential therapies or a cure for Alport syndrome. They are so humble about the incredible work they’re doing, and willing to share and collaborate. That, to me, is so inspiring.
Best organization decision: To have Alport patients serve in staff member roles. One of the reasons that my colleague and I, and our board members, can be so effective is that we are patients ourselves.
Hardest lesson learned: In my role to date, one of the hardest lessons learned is that no matter how much a pharmaceutical company is exploring your rare disease—it is just that, exploration. Not every lead, no matter how hard you work at it, is going to turn into a clinical trial investment by that company, which will need to invest many millions of dollars into clinical research. There are so many moving parts and pieces to consider from all perspectives. However, that doesn’t mean it’s time to close the door. Maybe a new door or option will open. Important to keep working with every possible open door, no matter what the outcome is.
Toughest organization decision: Recently, one of the toughest decisions was to make the leap to a new database platform. That may seem a bit simplistic and boring, but we’re a rare disease organization—every patient and family contact is a piece of gold, it’s someone’s life. We needed to be sure that we didn’t lose touch with anyone who expects and needs information from us about Alport syndrome education, research, clinical trials, etc. After 11 years with the same database platform, it was time to make a change, but this was also during a terribly busy and critical time when we had just pivoted to our first online family meeting. However, I felt strongly that the company wasn’t demonstrating state of the art cyber security, nor did the customer service have a strong track record, nor was the platform streamlining our growing needs—all for a price that I knew we could beat somewhere else. Every dollar our organization spends is important, and it’s up to steward those funds well. We made the jump, even though information technology is not my expertise. And, we did it all without a consultant and without losing contacts, and now we have more options, better security, easier syncing with other platforms, and spending less.
Biggest missed opportunity: ASF helped fund, organize, and promote a patient registry in the United States over the past 11 years. Over that time, there has been a great deal of important data being collected and stored regarding the kidney function of patients. However, another significant aspect of our disease is hearing loss, which is a life-long and life-changing challenge for many patients. I learned in early 2020 that a big obstacle to driving research about hearing loss and Alport syndrome is that no one has collected hearing loss data over time in patients. We’re changing all that now, but our organization and the patient registry did not realize this was critical data that could help be a catalyst for quality research.
Like best about the job: Working with people I care about and investing my time and energy into a cause that can change my family’s life and the life of so many others. I’m learning all the time and using every skill and experience I’ve ever had in my career in order to get this important work done.
Like least about the job: Working on preparing the annual taxes with our bookkeeper. I don’t mind creating and keeping budgets, but all the formulas and details for the taxes is my least favorite content area of the job.
Pet peeve: Lots of complaints and finger pointing without coming to the table with suggestions or authentic offers to help solve the problem. Many hands make light work. Many complaints just make more work.
First choice for a new career: I’d like to be a back-up singer for James Taylor.
Most influential book: I’ve read a lot of great books lately, such as Flowers of the Killer Moon: the Osage Murders and the Birth of the FBI by David Grann. But with the recent death of actress Cicely Tyson, it reminded me that the first book that made me fall in love with reading for life was The Autobiography of Miss Jane Pittman by Ernest J. Gaines
Favorite movie: Shawshank Redemption—I say that because the acting and story are extraordinary, but also because it’s the first movie that my husband of 21 years and I ever saw together.
Favorite music: Torch songs from the ‘40s and Broadway musicals
Favorite food: Chinese food of all kinds
Guilty pleasure: Listening to the original caste of Hamilton on full volume and singing along when I have the house to myself.
Favorite way to spend free time: Walking or riding a bike along the beach near my house with my husband, kids, or girlfriends. Or, reading a book in the sun in my back garden.
Sign up for updates straight to your inbox.