Kidney disease advocacy is something no parent plans to be exceptional at. In fact, kidney health wasn’t even a blip on Marlene Botta’s radar until her 14-year-old daughter, Jacqueline, was diagnosed with Nephrotic Syndrome on February 28, 2016.
It’s a day Botta has a hard time describing. “My stomach just dropped to the floor, and I felt like throwing up. My first reaction was, ‘This is going to be bad,’” she said.
After an original misdiagnosis and an entire week anxiously spent in the hospital, Jacqueline began taking steroids to try to treat her protein-spilling kidneys.
“That was probably the most frightening and traumatic time in her life, because she blew up so big, so fast overnight. She didn’t want to go to school, she didn’t want anybody to see her,” Botta said.
For six more months Jacqueline proceeded with high dosage steroids, however her body resisted the treatment. The Bottas ultimately made the decision to start a search for a different doctor; one who had dealt with and specialized in Nephrotic Syndrome cases.
“I was hysterical and desperate, and I felt like there was no urgency to find a cocktail of drugs that worked; that’s when I sent a crazy message to NephCure,” Botta said.
With support from NephCure Kidney International, Botta found an alternative doctor and connected with other patient families in her local community.
Jacqueline tried many other drugs, including tacrolimus and prednisone, all of which were unsuccessful in slowing her declining kidneys. The next step: clinical trials.
“Although the drugs ended up not really help Jacqueline, the trial that we were in was comprehensive and probably the best care that she could’ve gotten. The amount of care that you get in a trial is totally different than what you would get in a regular visit. With a regular care plan you see your nephrologist every 2-3 months, in a drug trial you’re seeing them every week or every other week,” Botta described.
While Jacqueline’s first biopsy displayed Minimal Change Disease, her second biopsy proved otherwise. It wasn’t until June 2018 that she was officially diagnosed with focal segmental glomerulosclerosis (FSGS).
“And I just cried and cried again,” Botta wept.
The change in diagnosis also caused a change in applicable clinical trials. Jacqueline switched into the Sparsentan study, which offered glimmers of hope and simultaneously brought along a new set of challenges.
Amid the fog of the doctor’s appointments, hospital visits, and medications, Botta immediately knew what she was called to do.
“I couldn’t sleep one night, and I just said, ‘There’s got to be a better way.’ So, I got in touch with other families, saw there was a walk, and wanted to get involved so that I wasn’t so alone,” Botta recalled.
It was at that first walk on Long Island, New York where Botta truly caught the ‘Advocacy bug’. She wanted to make the walk even better and her involvement quickly became a lifestyle.
Botta plastered her entire town with pictures and posters, sharing her daughter’s story with anyone who would listen. She quickly was asked to take on the Chairperson role of the Long Island Walk. Her involvement the past several years promptly increased the overall fundraising efforts—last year the Long Island Walk raised $61,000.
“My first year as Chairperson, I invited a bunch of elected officials to the walk. Every single one of them came and every single one of them knew someone at the walk,” Botta said.
In her experience, getting your story out is the key when it comes to advocacy. To make change at a state level, Botta stresses the importance of working with your elected officials.
“Contact your elected officials, meet with them personally. Take your speaking points with you, but always remember your family’s story is what they want to hear. Be persistent. If you get a ‘no,’ go back until you get a ‘yes.’ Don’t let anybody tell you that you can’t do it,” she advised.
Botta had previous work experience in public relations at the state capital in Albany, which provided her a wealth of knowledge when it came to understanding who she needed to speak with in order to get an entire Day of Awareness for the state of New York.
She worked with various elected officials for roughly two years to secure a proclamation that was passed first in the State Assembly. This year that proclamation was presented to the Senate, officially making March 27, 2019 Nephrotic Syndrome Awareness Day in New York state.
Because of this work, New York State Senator Shelley Mayer has now offered to partner with the other elected officials to create a permanent resolution, in the near future, that would make March 27th Nephrotic Syndrome Awareness Day every year.
Another recent accomplishment was starting the first ever Rare Disease Day at the New York Police Department Headquarters in Manhattan, attended by more than 20 rare disease groups and 300 patient advocates. Botta’s husband, Anthony, has worked for the NYPD for 17 years, but it wasn’t until October 2018 that she got the idea to include the entire department in a day of awareness.
“The pink was overwhelming,” Botta recalled.
The idea sparked after she noticed an abundance of pink breast cancer awareness ribbons plastered on police cars and the building—it lit a fire inside her. Through her diligence and close work with the NYPD Deputy Commissioner of Administration, she was able to start Rare Disease Day; an afternoon where families within the department who have children with rare diseases come together and learn more about each other and the resources available to help them.
“It really is all about persistence, persistence, persistence. Never let anyone tell you it can’t be done,” Botta shared.
As far as future projects and goals, Botta has been named the NephCure Community Lead in the New York region. She’ll be responsible for overseeing all events, welcoming new patients, overseeing advocacy, and more. Botta is also working towards getting a documentary made to share her story and overall mission.
“It’s on the horizon, 2020. Even if I have to mortgage my house,” Botta joked.
Below is a list of helpful tips curated by Botta to help you reach out and provide change in your community: