Simmaron Research: 2020 and Beyond - You're invited to take a closer look at opportunities to invest in groundbreaking ME/CFS research through SRI
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Simmaron Research: 2020 and Beyond You’re invited to take a closer look at opportunities to invest in groundbreaking ME/CFS research through SRI
WHY Support Simmaron?
Supporting SRI’s Areas of Excellence
Simmaron Research’s pioneering scientific work is led by
ME/CFS expert Dr. Daniel Peterson and Fellow Dr. Gunnar
Gottschalk and carried out by a team of dedicated professionals.
The SRI team’s ability to carry out this visionary work remains
dependent on funding predominantly received through acts
of philanthropy and generosity by people who care about our
mission. In addition to always keeping our efforts mission-
focused, our team is also distinctly dedicated to the following
areas of excellence:
Pilot Studies: Neither the government nor private industry will fund large studies without first having
evidence from smaller studies - pre-pilot and pilot investigations – demonstrating that a particular avenue
of research is valid and worth pursuing. The lack of those smaller studies is a significant deficit in ME/CFS
research. That’s why the Simmaron team has spent several years generating novel studies that have and
continue to inform the pursuit of larger ones.
Clinical Ingenuity, Diagnostics, & Treatment: Strategically positioned in the field of
translational science, the Simmaron team works closely with our clinical partner, Sierra Internal Medicine,
to conduct studies that look more closely at biomarkers for disease, efficacy of applied therapies, and
comparative outcomes in patient cohorts.
Data Wealth: Thanks to our clinical partner and others, the Simmaron team has access to nearly three
decades of biological samples and records from approximately 1,000 ME/CFS patients. We store this data,
manage it with integrity, and use it in research. While we have tapped into this data wealth over several
years of work, there remain countless ways to study what we possess in our freezers and files.
Collaborative Relationship Building: As recognition of the need for study in ME/CFS and other
neuroimmune disorders grows, so does Simmaron’s network of collaborators. Our foundation’s scientific
advisory board, study partners, and sponsored scientists span the globe. Drawing on the rich insights from
our network, we conduct collaborative work that is both groundbreaking and necessary for changing the
clinical landscape.
“In 2019, SRI continued to pioneer
research through collaborative
partnerships and ground-breaking
Legacy Training: At Simmaron, we believe in supporting
study. In 2020, we aim to stay the academic and professional goals of young scientists. Our
inspired in our work, connected with fellowship and internship programs are designed to bring young
our community, visibly committed to people into a space where they learn about an underserved
realizing our mission of understanding population in medicine, develop or refine research skills, and
ME/CFS, and bringing relief to sufferers
through treatment.”
grow as young professionals. The Simmaron team takes every
- Brooke Bishop, SRI Executive Director opportunity to pass on knowledge and skills to those brought into
our workspace in order to change the way the next generation of
medical professionals understands ME/CFS.
2019 Review
Celebrating Progress and Outcomes
Ampligen Restart “I have gratefully participated in many
Following an unfortunate hold, we are happy to announce that the Simmaron research studies, because
phase III clinical trial of Ampligen for ME/CFS patients has resumed. the only way for ME patients to get our
We have on-going investigations in order to study the response lives back is to study treatments and
of individuals before, during, and after treatment in collaboration which individuals they work for. We
with Cornell University, Dr. Maureen Hanson and AIM Immunotech can’t improve our lives without the heart
(formerly Hemispherx). We would like to give a big thanks to all and minds of people like Dr. Peterson
and his research crew.”
of the participants in this trial for their patience and perseverance
- Robert Miller,
throughout a difficult hiatus.
SRI Research Study Participant
CDC Collaboration
In mid 2019 we completed year 6 of the of the study entitled, “A multicentered clinical assessment of ME/
CFS” in collaboration with the Centers for Disease Control and the Open Medicine Institute. This is the
largest, most extensive longitudinal study completed in our field, and it drew the participation of 6 other
ME/CFS specialists. Primary goals of the study are to identify the progression of the illness over time,
characterize patient profiles and subsets across expert clinical sites, and monitor potential interventions/
treatments across a wide range of individuals. Numerous publications (including the three that are already
available) are slated to be out soon.
Conference Presentations
This year Jineet and Eva, two students participating in SRI’s internship program, were selected to
present data they collected at the groundbreaking NIH Accelerating Research on ME/CFS Conference in
Bethesda, MD in April. Following his year with SRI, Jineet is now attending Virginia Commonwealth School
of Medicine, while Eva is working for a biotech firm in Cambridge, Massachusetts. In the past year, our
fellow Dr. Gunnar Gottschalk presented at numerous international conferences including the Invest in ME
conference in London, The NIH Accelerating Research on ME/CFS Conference, the NIH Center Grant
Working Group, and the Association of Neuroscience Meeting.
Publications
This year the Simmaron team, along with our collaborators co-authored 3 new publications, including our
most recent in collaboration with Maureen Hanson, Ph.D., highlighting differential patterns of immune
cell metabolism that was recently published in the Journal of Clinical Investigation. Our fellow has also
published 2 first author works highlighting the repurposing of lipid lowering agents and their neuroprotective
capabilities.
Biobank Update
Last year, SRI received over 6,000 tissue samples, many of which date back to the original outbreak in
Lake Tahoe where our clinical partner’s groundbreaking work with this disease began. Our newest year-
long research intern will be working with the fellow to connect these samples back to the initial clinical data
collected at the time of sample collection. We are hopeful that by using tools that are available now, we may
be able to shed more light on the events that took place in the Lake Tahoe basin in the early 1980s.
Passionately Pursued Work in 2020
Studies & Programs Slated for the New Year
Project: Seahorse I
“SRI is a unique research initiative in a woefully
Collaboration: Cornell University
underserved disorder. The commitment to finding
This project aims to take a multi-omics approach
answers for patients with this disorder, combined
to understand differences in isolated immune
with rare insights into how to evaluate and
cells collected from ME/CFS patients and
investigate what might be causing ME/CFS, is
healthy controls. The aim of this project is to help
unparalleled.”
researchers in the field better understand phe-
notyping different subsets of ME/CFS patients. - Dr. Mady Horning, MD, Columbia University Medical
Funding goal: $75,000.00 Center, SRI Scientific Advisory Board Member
“Dr. Dan Peterson is a highly creative
Project: Red AMP*
physician with a rare depth of knowledge Collaboration: Centers for Disease Control
of ME/CFS. He has helped many patients In this retrospective, longitudinal study we are ana-
improve their lives. I am glad to be a lyzing both unstructured patient medical records from
member of the SRI Scientific Advisory our clinical partner and structured case report folders
Board to make progress on research and derived from the Ampligen® 511 Phase III clinical trial.
treatment for the disease.” With the help of partners at CDC, we aim to 1) validate
- Dr. Maureen Hanson, PhD, Cornell University,
our responder cohort and 2) to identify surrogate clini-
SRI Scientific Advisory Board Member
cal makers of response to Ampligen® therapy.
Funding goal: $100,000.00
Project: AMP-Nano* *Asterisks denote a treatment-focused study
Collaboration: Cornell University
In this prospective, longitudinal study we aim to
identify why some ME/CFS patients respond to
specific intravenous therapies provided by our
clinical partner. Our primary goal is to identify
phenotypic responders to therapies and develop a
treatment algorithm that can be shared with other
clinicians in the field of ME/CFS patient care.
Funding goal: $150,000.00
“Research, and the application of new findings,
brings hope to providers and patients alike.
Hope is part of the SRI mission.”
- Dr. Konstance Knox, PhD, Coppe Laboratories,
SRI Scientific Advisory Board Member
Passionately Pursued Work in 2020
Studies & Programs Slated for the New Year
Programs: How SRI Supports Young Scientists
Simmaron Research Post-Doctoral Research Fellowship
Program
Dr. Gunnar Gottschalk, our Research Fellow, is supported
in his plans for: 1) continued preparation for advancement
to an M.D. focusing on ME/CFS 2) Maintaining a lead role
in development & management of Simmaron research
projects and 3) and tackling an emerging role in translational
medicine, bringing results to patients as actionable
information and application for future personalized medicine.
Funding goal: $55,000.00 for 2020, $55,000 for 2021
Simmaron Research Undergraduate Internship Program
Simmaron Research offers part-time and full-time
undergraduate research internships in fall, winter, spring,
and summer quarters. We offer both paid and unpaid (school
credit) opportunities that run for 10-12 week intervals. We
additionally offer a “gap year” internship which is currently
being held by a recent Texas Christian University graduate
with a desire to pursue a medical degree. Interns work at
Simmaron headquarters in Incline Village and are afforded
unparalleled opportunities to deepen their understanding
of clinical research, develop related skills, and interact with a dynamic research team and patient
base. In recent years, Simmaron has had undergraduate interns win travel awards for poster
presentations at the NIH Accelerating Research in ME/CFS Conference. Additionally, the vast
majority of the students who have completed our program have moved into graduate research work
and/or medical school.
Funding goal: $40,000.00
“SRI’s internship program provides
a unique experience in which I am
able to be involved in life-changing
research but also obtaining clinical
experience with leading professionals
in the field.”
- Joelle Park, SRI Intern (2019)
The Big Picture: 2020 and Beyond New Collaborations & Visionary Science Project: Whole exome sequencing of families suffering from ME/CFS Collaboration: Open Medicine Foundation, Stanford University This project involves collecting DNA samples from families that have multiple lineages of ME/CFS. We aim to compare individuals within families that are both affected and non-affected, potentially enabling identification of novel genetic aberrations. Funding goal: $75,000.00 Project: Assessment of 25 bone marrow biopsies from ME/CFS patients and healthy controls harboring B-cell clonal rearrangements Collaboration: Stanford University Over the past 3 years our team has collected bone marrow samples from ME/CFS patients and others with b-cell clonal rearrangement. B-cell clonal rearrangements account for a significant number of lymphomas diagnosed in ME/CFS patients in Dr. Peterson’s clinic. We aim to analyze marrow tissue at the molecular level to identify the driving force behind this extremely dangerous immune perturbation. Funding goal: $150,000.00 Project: HLA typing in ME/CFS families Collaboration: University of Montreal Human Leukocyte Antigen (HLA) typing allows categorization of the protein receptors on immune cells. Multiple studies have reported that ME/CFS patients’ HLA types cluster into groups that are different than unaffected individuals. Using HLA technology, we aim to better understand the potential genetic predisposition for the immune dysfunction observed in ME/CFS patients. Funding goal: $100,00.00 The Development of Patient Derived Induced Pluripotent Stem Cells (IPSCs) from Skin Fibroblasts and Peripheral Blood Mononuclear Cells—Modeling Drug Response* Collaboration: Avik Roy Ph.D., C. Gunnar Gottschalk Ph.D., Rush University Medical Center Induced pluripotent stem cells (IPSCs) are cells that have been genetically reprogrammed to an embryonic stem cell–like state by being forced to express genes and factors important for maintaining the defining properties of embryonic stem cells. IPSCs can be further cultured to express the phenotype of any cell residing in either the periphery or central nervous system. Recently, we have developed a protocol to isolate IPSCs from easily accessible whole blood and skin fibroblasts samples taken in the clinic. Following isolation, IPSCs can be immortalized prior to further differentiation. The downstream differentiation of IPSCs into the cells relevant to a disease phenotype provides a non-invasive mechanism for personalized drug screening investigations, and complimentary studies aimed to understand the role of functional genomics, proteomics and metabolomics within that individual. Using this tool, we recently described for the first time the functional role of a homozygous BPOZ-2-point mutation as it relates to the development Parkinson’s Disease in a severely affected pediatric patient. IPSC technology is slated to be the future of personalized medicine, and its implementation in the field of ME/CFS is both novel and critical. Funding goal: $100,000 *Asterisks denote a treatment-focused study
A Community of Support
Simmaron Research Needs You
Simmaron Thanks You
Our team’s success in research has been due in large part to the generosity of those who share our
passion for seeking answers and changing lives. We at Simmaron remain in a posture of gratitude and
humility in our work, recognizing the asset that is our faithful donor and study participant communities. It
is because of you that we are able to bring improved quality of life to patients through research. As 2019
comes to a close, our team wishes to express our sincerest gratitude to our persistent and generous ME/
CFS community for their involvement over the last year.
You’re Invited to Partner with Simmaron Research:
Ready to join our community of philanthropists and donors? You can make your tax-deductible
contribution today. Donations are accepted in check form (mailed to address on this brochure)
& online at https://donatenow.networkforgood.org/SimmaronResearch
Article Feature:
New Yorker Magazine
On September 3, 2019, the New Yorker
Magazine published “A Town for People with
Chronic Fatigue Syndrome”, featuring the
long-running drug trial of Ampligen conducted
by Dr. Peterson, Simmaron’s Scientific
Advisor and clinical partner. Written by ME Illustration by María Medem
patient Mike Mariani, the article brought to an influential audience
the compelling story of patients moving to Incline Village to participate in treatment trials, and
the dedication of Dr. Peterson and Simmaron to propel these studies in pursuit of a first FDA
approved ME medication.
https://www.newyorker.com/culture/personal-history/a-town-for-people-with-chronic-fatigue
“When friends of Dr. Peterson asked me to
join the forming of Simmaron in 2011, I was
honored to say yes. My goal is to help all
those who suffer find diagnosis, treatment,
and healing. We’ve got some of the best
opportunities in 34 years for getting this
disease beaten.”
- Dr. Jan Armstrong, PhD, SRI Executive Board Chair
We are on a Mission
To play a key role in developing scientific research to improve diagnosis, treatment and medical
understanding of ME/CFS and other neuroimmune diseases.
To help fund and conduct pilot studies to determine diagnostic markers and potential treatments for
ME/CFS.
To openly share our findings with the scientific and medical communities to help develop translational
science that ultimately improves the quality of life for people suffering from ME/CFS.
Contact: Scientific Advisory Board:
Simmaron Research Inc. Dr. Daniel Peterson, MD, Sierra Internal Medicine
948 Incline Way Dr. Konnie Knox, PhD, Coppe Laboratories
Incline Village NV 89451 Dr. Maureen Hanson, PhD, Cornell Univeristy
805.503.5743 Dr. Mady Horning, MA MD, Columbia University
Dr. Paul Guyre, PhD, Dartmouth University
Find us online:
simmaronresearch.com SRI Team:
redefiningmecfs@gmail.com Brooke Bishop, Executive Director
twitter: @redefiningmecfs Marco Maynard, Research Coordinator
instagram: @sri_redefines Jane Green, Infusion Nurse
facebook: @simmaronresearch Donna McCarey, Infusion Nurse
SRI Executive Board:
Dr. Jan Armstrong, PhD, Chairman of the Board
Courtney Miller, President
Jason Green, Treasurer
Wes Brown, Secretary
Dr. Gunnar Gottschalk, PhD, Board Member
Simmaron Research Inc.,
a Nevada non-profit and 501 c 3 tax exempt organization
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