Lisa Butler, Executive Director of the
GBS|CIDP Foundation International
BY JULIE BIRKOFER, PPTA SENIOR VICE PRESIDENT, NORTH AMERICA & GLOBAL HEALTH POLICY
Can you tell me about the GBS|CIDP Foundation and the
work you do?
We were founded 35 years ago by Estelle Benson. Her
husband, Bob Benson, was diagnosed with GBS and when
she went to look for information and support services
for this rare condition, nothing existed. She vowed that
she would do something about this. The foundation
was started in her living room outside of Philadelphia,
Pennsylvania. Estelle Benson approached the University
of Pennsylvania and Dr. Arthur Asbury responded with
his resident, Dr. David Cornblath, and it blossomed from
there. Now we serve 35,000 members and have opened our
doors to other autoimmune neurologic disorders such as
CIDP, MMN, and others.
From the very beginning, the foundation wasn’t founded
to look for a cure—it was founded to provide support. We’ve
been true to that mission from the beginning. We strive to
provide access to early and accurate diagnosis, appropriate
and affordable treatment, and knowledgeable support
The GBS|CIDP Foundation International
is the preeminent global non-profit
organization supporting individuals and
their families affected by Guillain-Barré
syndrome (GBS), chronic inflammatory
demyelinating polyneuropathy (CIDP), and
related syndromes such as multifocal motor
neuropathy (MMN) through a commitment to
support, education, research, and advocacy.
The four mission pillars that guide us are: support, education and
awareness, research, and advocacy. Every decision we make is based
on these four pillars.
services. The four mission pillars that guide us are: support,
education and awareness, research, and advocacy. Every
decision we make is based on these four pillars. We are very
fortunate to have support from the pharmaceutical industry.
We also have an incredible global medical advisory board
with some of the world’s top neuromuscular neurologists
who guide our science and research. We have an amazing
board of directors and are fortunate that we are never
lacking for volunteers. People are always stepping forward
and wanting to give back. We have over 200 volunteers
worldwide who provide support. They are available for
patient visits, they organize local chapter support group
meetings, they hold walk events, and they engage in advocacy
from the grass roots up to Capitol Hill.
What is Guillain-Barré syndrome?
Guillain-Barré syndrome (GBS) is an infl ammatory disorder
of the peripheral nerves. GBS is characterized by the
rapid onset of numbness, weakness, and often paralysis
of the legs, arms, breathing muscles, and face. It is a rare
condition affecting 1-2 people per 100,000. Typically,
in GBS, the treatment protocol is plasmapheresis or
intravenous immunoglobulin (IVIG).
What is Chronic Inflammatory Demyelinating
Chronic Infl ammatory Demyelinating Polyneuropathy
(CIDP) is a rare disorder of the peripheral nerves
characterized by gradually increasing sensory loss and
weakness associated with loss of refl exes. CIDP is a chronic
form of GBS. Patients need infusion therapy every four to six
weeks. Most commonly CIDP patients are treated with IVIG,
which is the only approved treatment for CIDP.
How did you get involved in the GBS|CIDP
In 1990, my father-in-law was diagnosed with GBS. My
family had never heard of it and couldn’t pronounce it. He
survived and made a very good recovery. He was treated at
the University of Pennsylvania and the physicians there put
my mother-in-law in touch with Estelle Benson.
Ten years later, our son started displaying some issues
with his gait. We thought there was some similarity to my
father-in-law’s symptoms but had no idea that children could
get GBS. He was indeed diagnosed with a serious case of
GBS and was treated with IVIG and eventually made a pretty
full recovery. When my son was diagnosed, my motherin-
law reached out again to Estelle and the Foundation for
information and support. The Foundation sent us literature
and when my son relapsed they put us in touch with a parent
volunteer who helped to put our son’s neurologist in touch
with a pediatric neurologist who specialized in GBS in order
to help determine the best course of treatment.
As soon as my son recovered, both he and I started
volunteering for the Foundation and eventually took over as
the parent liaison for children who were diagnosed. I started
working full time with the Foundation three years ago,
helping with the volunteer program. I next started working
in marketing and development. When the Executive Director
stepped down about a year ago, I was fortunate to step into
the role. I am honored and humbled that I spend my days
helping other people—there is nothing more fulfilling. The
biggest impact we provide is connection and community in a
world where people feel isolated and alone.
What has been your greatest challenge?
I think our biggest challenge is awareness, on many levels,
with physicians, emergency room staff, and the general
public. People have issues with not being able to obtain early
diagnoses and therefore do not receive early treatment, which
can affect their outcomes.
I think the hardest day is when you talk with patients
and you don’t have an immediate answer for their concern
or situation. That, very often, deals with financial or access
to care issues. Continually reevaluating the programming
we’re providing and making sure we are answering the
patient’s needs–that’s a challenge but that is our mission.
What are the greatest strengths of the Foundation?
Providing that sense of community and connection for
patients and making them feel a part of something. Often,
people come to one of our events and it is the first time
they’ve met other people who have had a similar journey and
it can be a very emotional and powerful moment. Knowing
that we are providing these connections is incredibly
fulfi lling. We provide a place where everyone can belong.
Also, our doctors are so collaborative. The Chairman of
our Global Medical Advisory Board, Dr. Kenneth Gorson
at St. Elizabeth’s in Boston, Massachusetts and our Vice
Chairman, Dr. Bart Jacobs, at Erasmus University in the
Netherlands represent this group of world’s finest in the
field of neuromuscular neurology. It is incredible how
they’ve devoted themselves to these conditions.
What are the Foundations priorities?
We have never swayed from our mission. We are solidly
focused on our mission. We need to be constantly responding
to new challenges that our patients face. For example, dealing
with the impact of the Zika virus that can cause GBS. Puerto
Rico has been signifi cantly impacted with Zika-related
GBS and the Foundation has partnered with the Centers
for Disease Control and Prevention (CDC) to host a large
chapter meeting where past GBS patients will attend and
be a resource for newly diagnosed GBS patients. The CDC
will participate and talk about how they will support these
patients. Our medical advisory board published an article in
the New England Journal of Medicine about the Zika virus
and its association with GBS. We’ve talked with our industry
partners about donating IVIG to Central and South America
where there is a real need for therapies.
Our newest mission is advocacy and we’ve done a lot
of work both on Capitol Hill and at the grass roots level
to reach out to members of Congress. On the occasion
of our 35th anniversary, we honored Congressman John
Garamendi (D-CA), who has a family connection to
GBS. Congressman Garamendi has been an incredible
leader for us.
GBS has also been named as an eligible condition with the
Peer Reviewed Medical Research Program, a U.S. Department
of Defense program. The Foundation was able to establish the
connection between the deployment of service members and
the increased exposure to triggers of GBS. This opens up a lot
of research avenues and is a very exciting development.
What motivates you day to day?
We receive 75-100 inquiries weekly. The knowledge that we
can help that many people is incredibly motivating. Being able
to provide the resources and community for people who have
questions and who are looking for other people who have had
a similar path is very fulfi lling.
We have had some of our “walk and Rolls” where people
have literally taken their first steps. People will come to
a walk in their wheelchair and during the walk with get out
of their wheelchair and take their first steps. It is so moving
and exciting to see their journey and their success.
What does the future hold for the Foundation?
What I see for the future is that we move forward without
forgetting where we’ve been. We should never forget our
beginnings in Estelle Benson’s living room and remain
committed to our mission to provide support, education,
awareness, research, and advocacy.
We don’t presume to have all of the answers but we
strive to be the connector to the best resource for our patient
community. As we have grown and flourished over the past
thirty-five years, we look forward to ensuring our legacy by
strategically planning for the future needs of our patients.