Welcome.

I m Bonnie Feldman aec2onately known as DrBonnie360 and I delighted

to be back to Stanford Medicine X-as we work together bridge the autoimmune abyss
to make the Lonely Voices of Autoimmune disease less lonely.

Who in this room has an autoimmune disease or knows someone with an
autoimmune disease?

Are they in their 20s, 30s or 40s?

There is a surprising increase in mul2ple autoimmune diseases for young adults.

Who recognizes the Gartner Hype cycle? (It is usually a way to describe tech
adop;on)

Surprisingly, since last year I found myself recapitula2ng the Hype Cycle in my
personal journey as I became par2cularly interested in applying digital health tools to
autoimmune diseases.

Based upon my research interviewing more than 200 companies and aTending more
than 50 digital health mee2ngs I created this Autoimmunity Hype Cycle which shows
the microbiome coming up the hype cycle while monoclonal an2bodies have nally
reached the plateau of produc2vity.

If you would like to explore this more, see me aXer the talk, or come to my workshop
today at 1:20 pm. [see link for workshop hTp://bit.ly/1JyIvKd].

Why did I take this plunge?

I heard the lonely voices of autoimmune pa2ents, also known as spoonies, calling
to me across an abyss of frustra2on-
when I found myself in a family constella2on of autoimmune diseases, including
people marrying into my family!
Their symptoms were harrowing, their aTempts to nd diagnosis and treatment
disappoin2ng, and my hopes to prevent disease in my grandchildren were stymied.

Autoimmune is underserved and unrecognized despite the fact that they aect 16%
of the US popula2on, more than cancer and heart disease combined!
Yet, autoimmune diseases (including T1 diabetes) receive only $1B in NIH funding per
year, unlike cancers, which get 7 2mes as much funding.

Can you believe, it takes on average more than 3.5 years and 5 doctors to get a
diagnosis?
Once diagnosed, the available drug treatments are usually applied through a lengthy
and frustra2ng process of trial and error.
We can and must do be.er.


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Listening to the peoples stories, led me to look there for answers to these lonely
voices. (Those who know me, can aTest that I never take no for an answer)

So I dreamed of becoming a disruptor in autoimmune disease. Every ;me I
interviewed a new company, I wondered how we could apply their ideas to help the
autoimmune community.

And, I was inspired by the groundbreaking work of Kathy Gius2 of the Mul2ple
Myeloma Research Founda2on. She was able to bring new players together that
spurred mul2disciplinary collabora2on in new and dierent ways.
Look at the remarkable results in just 10 years- The MMRF helped bring 7
cancer drugs to market and increased the life expectancy of MM pa2ents
from 2.5 to 8 years.

We need to bring these collabora1ons to autoimmune disease.

I con2nued to dream.
Last year at MedX in Gepng to Yes,

At that 2me, we envisioned a high tech and high touch team for underserved
autoimmune pa2ents.

We saw a food-as-medicine team, a musculoskeletal integrity team and a well-being
team, all working in collabora2on.

The good news is, since that 2me I see complementary medicine gaining trac2on in
the autoimmunity community. Imagine if we could go one step further and these
teams could collaborate with our Western-trained physicians!

THATS what I want to make happen in autoimmune disease.

To move from disillusionment to enlightenment we need to work together to advance

from nding problems to taking ac;on.
The 3me is right.

My research, which you can nd on slideshare, uncovered three trends coming
together to ignite change:
The rst is Pa2ent power: the voice of the pa2ent, individually and collec2vely is
becoming stronger in research, development and clinical prac2ce.

The second is collabora2on and data sharing to build connec2ons across exis2ng
special2es and disciplines. I call it silo bus2ng.

The third, New insights, is the convergence of research in genomics, immunology,
microbiomics, etc. with input from movements like quan2ed self and ci2zen science
to turn data into knowledge.

Let me tell you a story about a woman who well call Judy.

Judy is in her 20s, suering with painful but variable GI symptoms and pelvic/hip
pain.

She goes rst to her general prac33oner, who oers standard treatments to quell
her symptoms and probably doesnt even consider autoimmune diseases in her
dieren2al.
He refers her to rst to an ob/gyn, then to an orthopedist and maybe to physical
therapy for her hip pain, but does not suggest dietary or mind/body interven2ons.
Months go by, her symptoms wax and wane and she begs her doctor to do
something more.
So he refers her to a gastroenterologist, who orders blood tests and a colonoscopy.
Based on blood biomarkers and visible intes2nal inamma2on, her GI doc tells her
she has IBD.

Now what? And does that diagnosis explain her hip pain?
Judy is in the trough of disillusionment feeling frustrated and alone.

Can new discoveries in immunology and the microbiome move Judy From the Trough
of Disillusionment to the Slope of Enlightenment and throw a lifeline to her and
others in the autoimmune community?

As we discussed last year, we are now nding that the GI tract is a major organ of
immunity aec2ng both health and disease. Through the gut-brain connec2on our
GIs even inuence our mental health!

There seems to be crosstalk between our internal microbial communi2es and our
host immune response. New research suggests links between the microbiome and
autoimmune diseases, not just GI ones, but also Lupus and RA.

For Judy, would diagnosing her gut problems earlier have shortened 2me to
treatment and prevented progression?
Judy doesnt really understand her treatment op2ons: oral cor2costeroids with ugly
side-eects, scary-sounding an2-inammatories or mysterious monoclonal
an2bodies that need to be injected.

Its hard to believe that even for IBD and Crohns, the standard of care does not yet
include dietary interven2ons.

So none of Judys docs even suggest experimenta2on with diet, exercise or stress
control.

But, many autoimmune pa2ents and an increasing number of doctors now believe
diet is crucial, not just for GI autoimmune diseases, where the connec2on seems
obvious, but also for Hashimotos, RA, MS, Lupus and others.

With limited 2me spent with her MDs, she feels lost and alone during the long
intervals between appointments.

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So Judy, baed and confused, turns to online pa2ent communi2es for informa2on
and support.

In communi2es such as myHealthteams, Chronology, autoimmunemom, Paleomom
and Furtherfood. and others Judy can nd folks experimen2ng with diet.

In other communi2es, like Smart Pa2ents, she nds informa2on on drug and clinical
trial op2ons.

And she nds uBiome oering to help her test her microbiome.

From other pa2ents, she hears about Yehuda Schoenfelds autoimmunity center,
where pa2ents are seen by autoimmunologists and wonders why she cant nd an
autoimmunity center in the US.







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But what about her hip pain? Her musculo-skeletal problems persist.

She feels increasingly discouraged as-- she gets referred to a trigger-point PT, a soX2ssue PT, an orthopedist, a podiatrist, a yoga therapist, a walking therapist, all
without much overall improvement.

S2ll frustrated, she hears about the work of Larry Smarr and the QS Collec2ve and
thinks that tracking her own data may help.

So she begins to track what she eats and how she feels, not just GI symptoms, but
musculo-skeletal ones, too.

Judy is intrigued by myNutri2onHealth, an app that allows her to track symptoms
against food to experiment with an elimina2on diet.

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Wonderfully, Judy discovers that some simple dietary changeselimina2on of

nightshades: tomatoes, peppers, eggplantreduces her muscular-skeletal pain.

Inspired, Judy wants to go further exploring her mind/body connec2on.

She nds Jiyo, a personal well-being companion via a comprehensive digital playorm.
This playorm gives you ways to engage and learn from others how to be feel well.

Based on 20 years of work of Lee Hood and the Ins2tute of Systems Biology, Arivale
gives Judy a chance to understand her genome, microbiome and lifestyle. By
gathering data from blood, saliva and the microbiome, she receives personalized
roadmap along with coaches to guide her what to do to maintain her health.

But wait, at the same 2me Judy reads about the UCLA data breach and begins to
wonder about her own data, who owns it and what happens to it.

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So going back to basics, Judy thinks that maybe a systems-oriented approach that
looks at the underlying cause of disease may help.
Unfortunately, Yehuda Schoenfelds autoimmunity center is based in Tel Aviv.
Perhaps she could nd a US-based prac2ce from the Ins2tute for Func2onal
Medicine.
On autoimmunesummit she nds talks by Drs. Mark Hayman, Susan Blum and Terry
Wahls, who all have autoimmune diseases that they controlled with their own diet
and lifestyle changes.
But she does not know where to nd

Finally, she nds the Open Medicine Ins2tute, where she nds our 3 themes -pa2ent
power, new forms of collabora2on and sharing as well as new data insights- put into
ac2on.

Built from the ground up with the pa2ent at the center, pa2ents own their data
supported by an open-data playorm called OpenMedNet. The back end of the Open
Medicine Ins2tute is an open-source, mobile-enabled integra2on playorm that
allows data sharing from many feeds: smart phones, emails, texts, fax, Web and so
on.

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This collabora2ve approach connects all those involved in Judys care - physicians,
case managers, imaging services, and clinical labs. (collabora2on and data sharing)
At the clinic, doctors perform advanced lab tes2ng including genomics and
microbiomics.

Importantly, this data is collected over 2me, allowing Judy to track her progress,
supported by nutri2onists and other specialists.
Furthermore, while at the clinic, Judy nds out about clinical trials and how she can
donate her data to research. (helping to turn data into insights)

The good news is that Judy has leX the trough of disillusionment. She is now
enteringthe slope of enlightenment, through pa2ent power, new forms of
collabora2on and data sharing.

Judy is no longer feeling isolated and alone.

Judy feels empowered and comforted.

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What else could help Judy and pa2ents like her?

How can we create new centers where she feels supported, encouraged and
empowered?
What if we could take the best of func2onal medicine, looking at the root cause of
disease and combine it with the open data sharing and analy2c capabili2es of the
OMI
And give Judy and her team an expanded toolkit which uses the best of conven2onal
and complementary approaches shown here. This approach would be in an open and
sharing system that fosters the growth of a global knowledge sharing community for
autoimmune pa2ents.

We welcome all of your help as we work together to make the lonely voices of
autoimmune disease less lonely. Link: hTp://bit.ly/20xRCXO
Help us help you and others advance from nding problems to taking ac2on. Join us
in the workshop at 1:20 today.

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