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Roche Virtual Summit Lauren Brenneman speaks Innovation and the CF community

Lauren’s introductory talk on the Patient Panel  Roche June 23 2020

Catia Fonseca of Roche asks Lauren:  How innovation came about in the Cystic Fibrosis community?

Thank you Catia and thank you everyone for having me here today.  I’m Lauren Brenneman, and I’m 41 year’s old and I have cystic fibrosis.  In 2006, I joined a website called CysticFibrosis.com, a website that now has been around for 25 years, and it’s run by my business partner Jeanne Barnett.  I joined to learn everything I possibly could to be in the be in the healthiest best shape to have a healthy pregnancy.  What I immediately found out, was that I was not as healthy as my doctor helped me to believe I was.  About a year later, I gave birth to a healthy baby boy and soon after found out the devastating news that he also had cystic fibrosis, despite my husband testing negative as a carrier.  The short story to the development of this platform, well it’s an ongoing story.  The sequence of events that got me there was that in 2008, a year after my son was born, I learned that there was a genetic modifier drug trial that was starting that would help not only me but my son.  So, it was a “no brainer’ for my family, for me to participate in this.  At the same time, I was moving from Philadelphia to Connecticut, so when I got there, I advocated to my doctor that I would like to go back to Philadelphia to participate in this clinical trial and actually I did for four years. In the total of my life, I actually moved around a lot, to nine different states. So, I saw at this time, that my data was really fragmented.  It was all over the country, in all different pharmaceutical hands.  This was MY DATA and I didn’t have access to it at least not easily, and the idea was born for a niche recruitment agency where patients could choose to be part of this because I had advocated to participate in this trial.  How many other people wanted to participate in things that they didn’t know about?  Right? Because the pharmaceutical companies can’t directly recruit, so the patient populations are really at the mercy of their doctors to hear about clinical trials oftentimes.  At the same time too, I was realizing if I was to collect information like contact information and consent to be contacted, I would probably also collect things like mood, and diet, and exercise. Things that I was seeing on my own personal development were actually really advancing my overall health yet weren’t really being tracked.  This would probably help create breakthroughs.  Meanwhile Jeanne, my business partner now, was in the throes of running her very busy patient community and pharmaceutical companies and all kinds of health care companies were contacting her to gain access to the data of the CF community.  She always insisted and I was a key opinion leader, that we be at the table that the patients be at the table and that the patients be compensated.  She truly believes in the value of the patient.  She really is a visionary and ahead of her time.  So clearly our missions aligned and we were a natural fit to work together.  So now we work on the development and the marketing of this platform that will allow patients to access, consent, and be compensated for sharing their data. We are  looking for partners to collaborate with us  and this is not just about CF.  CF is the model community that just happens to have been around a lot longer than a lot of other disease advocacy groups. We are looking for people to contact us for a conversation about aligning with our mission

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8 Comments

  1. July 7, 2020 at 6:03 am — Reply

    CF Europe has established the CF Community Advisory Committee (CAB) to provide patients with opportunities for innovation, treatment and care. CAB is a group of well-trained patient representatives who can talk to the CF patient community and various stakeholders in the CF community.

  2. July 10, 2020 at 4:08 pm — Reply

    Because it doesn’t matter whether or not you agree with the 97% of scientists who agree that climate change is happening and is manmade. The world leaders are getting together to try and solve the defining issue of the century.

  3. July 17, 2020 at 10:07 am — Reply

    Learned something from this talk. Thanks everyone! 🙂

  4. July 17, 2020 at 10:11 am — Reply

    Your community really has a powerful cause. More power to you! 🙂

  5. August 10, 2020 at 6:39 am — Reply

    I have my aunt who has cystic fibrosis. It truly is a great battle to go against with. She was able to conquer the stigma it caused here though.

  6. August 17, 2020 at 4:02 pm — Reply

    Loved this a lot. You guys are awesome!

  7. August 22, 2020 at 6:52 pm — Reply

    You have an exemplary community. Thank you for your work, how many patients wanted to participate in the study, but they just didn’t know about it. And thanks to you and the fact that you share information and support, many can know and participate. You are also very inspiring and encouraging, which is very important for these patients. I’m studying at a medical college and preparing a research paper on this topic.I’m preparing with the service that I found on Pick The Writer. I have learned even more about the importance of this kind of care for these patients.

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