Motivated by her daughter’s diagnosis of a rare disease, Maria Picone and her husband, drew on their extensive experience in clinical research and technology to found TREND Community. Using technology to harness data from social media they are turning anecdotes into real world data, to accelerate research into new treatments and to improve the quality of life for the rare disease community
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CEO Series: meeting the beating hearts behind the RARE brands

1.

What made you want to move into the wide world of rare disease, and then specifically in the founding of TREND Community and what did that journey look like?

​My husband, Chris, and I were thrust into the world of rare disease when our daughter was born in 2012. After a perfectly normal pregnancy and almost normal delivery she arrived via emergency caesarean section. The moments and days following were confusing, emotional, and the most frightening of our lives. At 10 days she was diagnosed with Prader-Willi syndrome (PWS); that same day we were discharged from the hospital and took her home.

In our previous life (that screeched to a halt 10 days prior) we were entrepreneurs. We had started a digital health company together in 2007 building clinical trial platforms, registries, and other software for pharma, biotech companies, research organisations, and hospitals. The year before our daughter arrived, we also co-founded an analytics start-up with three other founders. Together, Chris and I accumulated nearly 20 years of experience in clinical research and technology which would serve us well in this new chapter of our lives.
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TREND was inspired by our personal journey. Along with her diagnosis, our doctors delivered the terrible news that our daughter would have severe learning disabilities, battle obesity, and suffer her entire life from an insatiable hunger known as hyperphagia. We were devastated. I spent the next three months scouring the literature which only confirmed what the doctors had told us.
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Then I joined a private Facebook group of other parents caring for children with PWS and guess what? These kids were thriving. There was an absence of approved drugs—their parents were experimenting with diet, supplements, and off-label and experimental drugs. Clearly some of it was working. So, Chris and I set out to use the technology we’d built for our clients to systematically collect the anecdotes from our new community in order to understand what was working, why was it working, and why some things were working for some kids but not for others. 

2.

What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?

We quickly realised that collecting data the traditional way was hard, but we’d uncovered insights that would turn out to be life-changing for our daughter and for others too. What if we could just pull the data right out of the conversations we were having with one another on our private social network? The passing of the 21st Cures Act in 2016 highlighted FDA’s commitment to incorporate patient voices into medical product development and regulatory decision-making. This was just the motivation we needed to take a chance on our innovative idea. Along with our team, Chris and I began developing AI to analyse patient and caregiver conversations on social media to understand disease burden, what people were doing to manage their disease, and their unmet needs.
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​This new model has opened up a world of opportunities, but also presents many new challenges. In the next couple of years, I believe TREND data will play a key role in bringing more treatments to more patient communities. Our biggest challenge lies in navigating this grey space of unregulated mobile health research. We are following the evolving data protection and privacy regulations, consulting with domain experts such as lawyers and ethicists, and developing guiding principles and a governance structure to ensure that everything we do is for the good of our communities. 

3.

What is your proudest moment in your career thus far?

​Although this has turned into something so much bigger than our family, we began this journey to help our daughter. The knowledge we gained from analysing the social data from our own community and the work that has come out of that helped us to recognise that our daughter was experiencing symptoms of narcolepsy and cataplexy on top of PWS. Last summer she received a medical diagnosis of narcolepsy and now has treatment options that were not previously available to her. And now that she can manage her daytime sleepiness she is thriving in school. As her mom, every day I wake up thinking “How can I make her life even just a little easier?” I am so proud that the company and technology we have poured our hearts and souls into is already having such a meaningful impact on her life and the lives of others in desperate need of treatment options.

4.

What and who are your personal and professional inspirations and why?

I am personally inspired by the people I meet every day who are battling the unthinkable and do so with such bravery and determination to live better lives. There are so many. I couldn’t possibly pick just one.
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Professionally, I am inspired by Dr. Janet Woodcock. Dr. Woodcock is the Director of the Center for Drug Evaluation and Research at FDA. She is also a vocal advocate for medical innovations that will benefit patients, especially those with unmet medical needs.

5.

What advice would you give someone considering working in the rare disease space?

It’s incredibly rewarding, but it’s also emotionally heavy. We tell this to everyone we hire. It’s important to have people to talk to, a shoulder to cry on. It’s not just a job. I think it inevitably becomes a mission for everyone.

6.

Do you think the government does enough for the rare disease community at a local and central level, and what gaps do you see currently or emerging?

​I am encouraged by what I see from my perspective. Although there’s a lot of red tape, there are also a lot of doors to knock on. There are people at FDA who truly want to improve the lives of patients. I think, however, that there is still a pretty big communication gap. There is the patient-focused side of FDA, tirelessly working to listen to as many patients and caregivers as possible and understand their needs. Then there are the reviewers who are responsible for approving new therapies. We must get everyone around the table to talk about what is possible so that sponsors can propose trial designs that both work for the patient and are acceptable to the agency.

7.

What would you say are some of the biggest motivators for your employees? 

​All of our employees are encouraged by the meaningful nature of the work they do. Interacting with patients and caregivers is a source of constant inspiration. 

8.

What are the toughest parts of being a CEO within TREND, and conversely what are the most rewarding? 

9.

What would be your one wish for TREND for the year ahead?

10.

If you weren’t CEO of TREND what was Plan B?  What did your 10-year-old Maria want to do as a job?