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Welcome to the Renegade Research Fall 2024 Update — Part 01!
As the new season approaches, we're pleased to share a number of exciting new developments with you.
We're happy to say that this list is quite big, so we thought that it would be better to split it in a 3 email series in anticipation of our Fall 2024 Community Meeting on Friday, October 09 — where we will present all of these updates, and answer any questions you have.
Today, let's start where we're at in terms of Renegade Research, our umbrella organization and team. Next week, we'll talk about our initiatives around awareness and education; and on the following week, we'd love to share with you some highlights of our biggest project to date, Remission Biome.
This is a challenging problem we're tackling, with hurdles for patients in many different systems. We're driven to overcome these challenges, though. As Tess notes:
There are big feelings involved in this type of work. Compassion and sadness for the people who’ve been left behind. Outrage at broken systems. Determination to change them. Confidence that we can make a difference. Gratitude for the team, fellow chronic illness patients, the Renegade50 (our current trailblazing Remission Biome cohort), the healthcare providers and researchers who are on our side, and this incredible world wide community backing us. We're more committed to our mission than ever before, because we know that each remission event, each person feeling seen and heard, each researcher uncovering a breakthrough and each clinician learning new ways to support their patients is a step towards healing — something we all strive for.
We hope you to continue to have your company in this journey, we have so many new things coming up!
Wishing you all a happy Autumn,
The Renegade Research Team
P.S.: We're here for you! If anything in this newsletter reasonates with you or you'd like to give us feedback or words of encouragement, just reply to this email.
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As we kickstart new research projects and create more educational content and resources, please check our new subscription options to make sure you won't miss any new updates!
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Research Roundtable
Jeff Wood is on the Neuro Research Team at Mt. Sinai. He solved his own case of post-viral ME/CFS and then built a new model of the pathophysiology of ME/CFS, which he calls “Mechanical Basis”.
Jeff will present his model, followed by Q&A & discussion about how brainstem deformation can lead to downstream effects.
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RR Community Meeting
Join us in this webinar as we walk you through all of the new breakthroughs, achievements, changes and lessons learned along the past few months.
We'll discuss next steps and where we're headed with Renegade Research.
Questions welcomed — send us your questions in advance by replying to this email or join us live!
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Introducing Renegade Research
The striking colors of fall leaves reminds us of the changes that we're experiencing as our organization evolves.
Most of you know us from our largest project, Remission Biome, but you might not know about our nonprofit, Renegade Research.
Renegade Research (RR) is the umbrella organization from which we run Remission Biome (RB) as well as other programs in research, clinical care, education/awareness, and accessibility.
Remission Biome started as a grassroots, community science project to explore a hypothesis regarding spontaneous ME/CFS symptom remission following a course of antibiotics.
And while working on Remission Biome, Tess had a dream (literally!) to start a “Renegade Research Institute” which would bring together people who had been sidelined by chronic illness — to enable them to contribute to science on their own terms.
Other patient-led projects, such as #TheAcidTest & #TheNicotineTest, began to form organically over the next few months. Many who participated in #TheAcidTest were some of the patient-scientists who became members of the first Remission Biome cohort — that we named the Renegade50.
In Dec 2023, the collective vision became reality when Renegade Research incorporated as a nonprofit in Colorado with a three-person board (Tess Falor, Isabel Ramirez-Burnett, and Shelley Hayden).
We have since then collaborated with Academic Institutions and other organizations on surveys and trials, exploring other potential missing pieces within metabolomics, genomics and microbiome. We'll be sharing more on them in future newsletters and in our socials — which reminds us to ask you to follow us, @RenegadeRes, on Twitter, as we'll be announcing many new things there in the coming months!
At this moment we're concentrating our efforts in four main areas:
- Create all the conditions we need to better support our participants and the ongoing research projects, like Remission Biome
- Raise awareness and educate the medical community and public in general regarding ME/CFS, Long COVID and IACI
- Restructure our operations so that we can take in more projects and grow in a sustainable way
- Last, but not least, reactivate our crowdfund campaigns, reach out to donors and apply to grants so that we can finance all the items we mentioned above and invest in our team, as most of us are volunteers.
It's a lot of work, there is no way around it! So we hope you join us in this journey!
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Achieving the 501(c)(3) Status
And as Autumn marks the transition from summer to winter — we are happy to announce that Renegade Research transitioned to a 501(c)(3) tax exempt organization as of this month!
We can now accept tax deductible donations and expand our grant fundraising possibilities!
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Executive Team Update
You probably already know of Tess Falor, our Renegade Research founder, and how she guided Remission Biome at the start, riding a wave of support from the community.
At this moment she is our Interim CFO working on fundraising and new research developments.
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Tess Falor, PhD
Renegade Research Founder & Interim CFO
Tess Falor has an undergraduate degree in Aerospace Engineering and a PhD in Earth and Planetary Science. She was working at NASA's Jet Propulsion Laboratory when she first got sick with a mysterious illness, in 2005. She went 15 years without any diagnoses or treatments, being told that there was nothing wrong with her, so she began reading medical papers to try to figure out her own case. She now uses her research background, love of reading medical literature, and lived experience to guide her vision of how research can be done differently.
Follow @TessFalor on X.
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Renegade Research is run by CEO Isabel Ramirez-Burnett, who is also Project Director of Remission Biome.
If you have met her, you know that she’s a wealth of information and expertise in a vast array of topics on chronic illness, healthy living, supplements, clinical trials, science, and more!
Tess met Isabel on Instagram in 2021 and saw that they had common interests, including chronic illness and Hypermobile Ehlers-Danlos Syndrome (hEDS). They quickly became good friends and began working together on another project, before Remission Biome.
We couldn't be more excited to have her join Remission Biome and Renegade Research. Together we have accomplished so much.
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Isabel Ramirez-Burnett, NBC-HWC
RR CEO & Remission Biome Project Director
Isabel Ramirez-Burnett brings together patient care, science, education, and accessibility. She is the CEO of Renegade Research and the Project Director of the Remission Biome project. She has had ME/CFS for decades. When her health issues derailed her goal to become a doctor, she trained as a Systems Engineer and then later became a board-certified health coach to help other patients improve their quality of life.
Follow @IsabelRamirezRD on X.
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We're also very pleased to announce that Dr. John Haughton, MD, MS has joined Renegade Research and Remission Biome as Medical Director effective September 2024.
John is compassionate, caring, brilliant, open-minded, insightful, and curious - the type of doctor that I wish all people with complex, chronic illnesses had. He shares our vision for research and creating a scalable, decentralized care model.
With his support, he can help us help all patients, not just our research project participants. We're so grateful to have him on our team!
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John Haughton, MD, MS
Renegade Research and Remission Biome Medical Director
John Haughton, MD, MS has 30+ yrs in Patient Care, Workflow Tech, Healthcare Research, Clinical Informatics, and Geriatric Rehabilitation. He also has a background in Electrical Engineering and has been a senior executive in Quality/Clinical Info Management. He is now Medical Director of Renegade Research and Remission Biome.
Follow Dr. Haughton at @doc4care on X.
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The Renegade Research Team
We now have a team of over 30 staff and volunteers — many of whom are affected by ME/CFS and Long COVID.
It's incredible to work with a team that supports each other, even when we crash and have to pass the ball.
We wanted you to meet this group of wonderful humans, to whom we're sincerely thankful.
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And this is how we're allocating our efforts and to which programs or projects each of us is working on.
It's in these moments where we realise how much we live by the motto that "in order to solve our complex problem, we need a multidisciplinary approach", because most of us are working on some many different things — imagine if we didn't have our ME/CFS & Long COVID limitations!
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