Madison Area Lyme Support Group

by Jenny Lelwica Buttaccio
Posted 10/1/20

Keeping tabs on people with Lyme disease has always been tricky. The reasons are many: Cases of the illness often go unreported or misdiagnosed; the infection presents differently for each person; and some patients go on to develop long-term symptoms despite receiving the 10- to 21-day course of antibiotics recommended by the Centers for Disease Control and Prevention (CDC).

It’s these variables that make tracking and analyzing statistics for Lyme research complicated for any one person or a single group to tackle on their own. Wouldn’t it be helpful, then, if there was a mechanism — a “bigger brain” of sorts — that had the capacity to collect data on chronic Lyme while simultaneously researching it? The answers to creating innovative treatment options and improving patient outcomes just might be found in the field of data science.

Data science is where statistics and computer science meet. Data scientists use many skills such as statistics, programming, and algorithms to mine large sets of data (also called “big data”) in search of patterns.

Although it’s not a new methodology, data mining is relatively new to the Lyme community. It’s an approach being embraced by LymeMIND, an organization with a consortium of members and researchers that share a common goal of furthering the medical and scientific communities’ knowledge of Lyme disease, therapeutic interventions, and diagnostics.

For patients with the tick-borne illness, knowing that cutting-edge science is being applied to something that has inflicted months and years of suffering upon them presents new hope that change is coming to a disease so often fraught with controversy. To learn more about what kind of progress is being made at LymeMIND, we reached out to Savi Glowe, BA, Senior Director of Strategy and Operations in the Hasso Plattner Institute for Digital Health at the Icahn School of Medicine at Mount Sinai.

Glowe has been a part of LymeMIND since it was established five years ago, and she’s the chair of the annual LymeMIND conference. With the fifth conference quickly approaching on October 10th, we asked Glowe for an insider’s look at the work LymeMIND is doing, updates from previous years’ speakers, emerging developments that could impact Lyme patients, and the goal of the 2020 presentations. Here is what she had to say:

RawlsMD (RMD): Many people who get involved in Lyme research have a personal connection to the disease. Is this the case for you?

Savi Glowe (SG): Prior to joining the LymeMIND team, I had no personal tie-in to Lyme. I was a member of a team of data scientists looking to solve cool problems using data. The Lyme community was still new to the data science field, and it was exciting to have a novel challenge to tackle.

Since then, I’ve built a personal connection to the work and the patients I’ve encountered. I’ve also been building the LymeMIND conference since its inception. The event began with a desire to get all of our consortia members into the same room for a crash course on Lyme research to better understand the state of the field.

We were surprised when the event sold out and was well-attended by not just researchers and medical students but also patients, caregivers, and advocates. With every LymeMIND event I have managed, I’ve made it a point to create a more open, connected community.

RMD: The idea of “big data” and technology involved in healthcare could seem impersonal or overwhelming to some people. What gap in healthcare for Lyme does LymeMIND fill?

SG: To put it briefly, computers and big data give us a bigger playground. Lyme is a very complex, systemwide disorder. This has become clear to all researchers and doctors studying it. The goal of big data and the work of the LymeMIND is to elucidate a novel understanding of how the disease interacts with other pathogens, host systems, and vectors.

RMD: The 5th annual LymeMIND conference is taking place online due to the pandemic. How did you decide what topics to include this year?

SG: We wanted to keep as many of our topics as possible when we made the switch to a virtual event. The underlying focus of this year’s conference is patients and treatments. This is a change-up from previous years, where we also included panels and presentations on things like ecology and the global impact of the disease.

This year, we’re focused on the day-to-day impacts of the disease on patients and the community. We also made an effort to highlight patient advocacy opportunities and ways to get involved.

RMD: Can you give us any details on updates or breakthroughs that have occured since last year’s presentations?

SG: During the 2020 Conference, Dr. Richard Horowitz will be presenting updated information on his dapsone study, which he spoke on last year. [Dr. Horowitz is medical director of the Hudson Valley Healing Arts Center and founding member of the International Lyme and Associated Diseases Society. Dapsone is a drug historically used to treat leprosy and skin infections.] He’s conducted additional research on a few longitudinal patients and will share more details on those findings.

This year, our Mothers and Children panelists, Holly Ahern, MT(ASCP), Ms. Sue Faber, RN, Dr. Charlotte Mao, and moderator Ms. Phyllis Bedford, will be talking about new CDC recommendations around altered care regimens for pregnant women and young children.

Additionally, many of the researchers and clinicians featured during this year’s event have been working very deeply in COVID-19 over the past months. The broad COVID-19 response and research efforts have been a strong unifying factoramong everyone in the consortium and those participating in this year’s event.

RMD: Regarding COVID-19, do you expect that the same systems you have in place for Lyme, like aggregating data and conducting research, to be applicable to the virus as well? Have you begun to get involved with the COVID-19 patient population yet, particularly those who are long-term ill?

SG: COVID-19 has absolutely impacted the way Lyme researchers and patients look at both diseases. During the conference, Jason Bobe from the LymeMIND team will sit down with Dr. Horowitz and Dr. David Putrino, PhD to discuss commonalities and differences in persistent illnesses and identify opportunities to apply similar strategies in how we research these two diseases. [Dr. Putrino is a physical therapist and Assistant Professor of Rehabilitation Medicine at the Icahn School of Medicine.]

Other members of the LymeMIND consortium have been working on COVID-19 research on multiple fronts this year. For instance, Dr. Avi Ma’ayan, [professor of pharmacological sciences and director of the Mount Sinai Center for Bioinformatics], and the Ma’ayan Lab analyzed tens of thousands of pieces of published research on COVID-19, its life cycle, molecular mechanisms, and potential therapeutic drug compounds to create the COVID-19 Drug & Gene Set Library.

The database contains drug and gene sets related to the virus that users can view, download, analyze, and contribute to. The overall goal of the project is to identify community consensus, make researchers and clinicians aware of the development of new potential therapies as they become available, and allow the research community to work together towards a solution for COVID-19.

RMD: Is there anything you’re really excited about for this year’s event? Anything you can give us the scoop on?

SG: I’m particularly excited to hear our keynote speakers Dana Parish and Dr. Steven Phillips discuss their book Chronic: The Hidden Cause of Autoimmune Pandemic and How to Get Healthy Again. This book has been in development for a couple of years, and I believe it’s a fantastic representation of the bridge between clinicians and patients we hope to encapsulate with LymeMIND and our event.

As one of many team members who has been spending a lot of time diving into COVID-19 work for the past six months, I’m also excited for our COVID-19 in The Context of Lyme Disease panel.

RMD: Is there anything you can add about how LymeMIND is helping to shape the future understanding of Lyme disease?

SG: Our final panel this year, Looking Toward the Future, led by Ben Nemser of The Steven & Alexandra Cohen Foundation, will provide a fantastic look ahead at how the scientific breakthroughs of the consortium will be translated to improved patient care in the coming years. Translational research (research aimed at improving health outcomes) is something I’ve always been excited about, and I hope that our attendees will share in my excitement about what’s to come in this field.

RMD: In previous conferences, you’ve really encouraged participation from the Lyme community by showcasing Lyme artists and musicians and allowing people to share their stories on video. Why has that been important to you and the mission of LymeMIND? With a virtual conference, were able to find ways to include Lyme patients this year as well?

SG: Connecting patients with leaders in research and clinical work has always been at the core of our mission. This disease affects patients in dramatically different ways, and we believe it’s important for them to have a platform for sharing their experiences, questions, and frustrations. When this conversation includes professionals working on the frontlines of this disease, we aren’t just exchanging ideas and stories — we’re building a collaborative communitywhere patients are encouraged to share their experiences and stay informed, and researchers can see the impact of the disease firsthand and work to advance treatments.

This year, LymeMIND 2020 will feature a virtual art exhibit, both on our website and during the event. This year’s event also features two very special call-to-action-presentations that we hope will inspire patients to get involved in new ways:

• Bonnie Crater, Co-Founder and Board Member at the Center for Lyme Action, a new 501(c)(4) focused on lobbying efforts in Congress, will elaborate on what the Center does and how to get involved.
• Liz Horn, Principal Investigator at the Lyme Disease Biobank, will talk of the Biobank’s initiative and elaborate on how to donate to the repository.

Also, many of our panels and presentations are followed by a live Q&A session where patient attendees and others will be encouraged to submit questions and participate in the conversation.

RMD: What do you hope conference attendees take away from the conference this year?

SG: As this is our fifth annual conference, a big focus is looking back on how far we’ve come, and looking ahead to where we still have to go. We want our attendees to recognize and reflect on the substantial progress that has been made in understanding this disease, and how expanded collaboration between researchers, patients, and clinicians has played a role in this.

We also want attendees to be aware of challenges we must still overcome as a community. Our hope is that each attendee walks away with a greater understanding of the broader role they can play in the fight to understand the complexity of Lyme disease.

EVENT DETAILS:

 WHEN  Saturday, October 10th, 2020
 WHERE  A virtual event
 FEE  The event is free and open to the public. LymeMIND welcomes patients, advocates, researchers, clinicians, students, and anyone wishing to learn more and discuss the latest concerns and advancements in Lyme disease research.
 REGISTRATION  Interested attendees can register here, and more details on how to join our virtual event will follow.

SCHEDULE OF EVENTS

9:00 am EDT
Opening remarks
by Savi Glowe

9:10 am EDT
Keynote address, “Chronic: The Hidden Cause of Autoimmune Pandemic and How to Get Healthy Again,”
by Steven Phillips, MD, and Dana Parish

10:10 am EDT
“COVID-19- in the context of Lyme disease”
with Jason Bobe, MSc, Richard Horowitz, MD, and David Putrino, PT, PhD

10:25 am EDT
“Insights from Data Mining of Lyme Disease Patients
by LymeMIND” with Avi Ma’ayan, PhD

10:40 am EDT
“Novel Treatments: Making sense of all the treatment options”
with John Aucott, MD, Tania Tyles Dempsey, MD, ABIHM, Andrew Petterson, DO, and Richard Horowitz, MD

11:20 am EDT
“Bartonella and Co-infections”
with Marna Ericson, PhD, Monica E. Embers, PhD, Edward Breitschwerdt, DVM, and Robert Mozayeni, MD

11:50 am EDT
“Lyme Disease – 5 years of progress”
with Jason Bobe, MSc

12:00 pm EDT
“Call to Action: Center for Lyme Action”
with Bonnie L. Crater

12:08 pm EDT
“Lyme Biobank’s tissue repository”
with Liz Horn, PhD, MBIP

12:10 pm EDT
“Looking towards the future”
with Bennett Nemser MPH, MBA, John Aucott, MD, and Brian A. Fallon, MD, MPH

12:25 pm EDT
“LymeX Innovation Accelerator”
with Bennett Nemser MPH, MBA, Eric D. Hargan, JD, BA, ADM Brett P. Giroir, MD, and Kristen Honey, PhD, PMP

12:40 pm EDT
Closing remarks
with Savi Glow