1. GBS|CIDP Foundation International
YOUR NAME
Liaison—YOUR AREA
YOUR PHONE NUMBER
YOUR ADDRESS
It’s a great idea to open the presentation with a brief (no more than 1 minute) story about your own experiences. Personal stories can get everyone’s attention. Feel free to conclude with talking about how your experience in the hospital was positive/negative because your care team knew/didn’t know about how to diagnose, treat, and care for GBS or CIDP. This entire presentation should take NO MORE THAN 20 MINUTES. Hospital staff are incredibly busy, and we are grateful that they are able to take time out of their busy schedules to meet with us. We must respect their time!

2. About the GBS|CIDP Foundation International
Founded in 1980 with eight people around Bob and Estelle Benson’s dining room table
Has since grown to 30,000 members in 162 chapters in 47 countries (104 in the US alone!)
Provide some background on the Foundation. In 1979 Bob Benson contracted GBS and he and his family had no information or support—treatments were also nonexistent so the only thing they gave him for pain and to help him sleep was a glass of wine before bed. Bob and Estelle Benson vowed that if Bob survived, they would dedicate their lives to ensuring that no other patient with GBS suffers alone and that everyone has access to an accurate diagnosis, information, treatment, and support services.
Since 1980 we have grown from 8 members to over 30,000 around the world. We have 162 chapters in 47 countries, with 104 chapters in the US alone.

3. What We Do
Support: Volunteers (liaisons) visit/speak with patients and plan local chapter/support group meetings
Education: Informative literature and events for patients and medical professionals, MAB available for free consultations
Research: Dedicated over $2 million in research grants in the last 10 years, sponsored over 30 research projects
Advocacy: Lobby congress to pass legislation that increases funding for research, helps with insurance payments
The GBS|CIDP Foundation has 4 central pillars that shape our goals and activities.
Support: we have a network of volunteers who will travel to hospitals to visit with patients and their families. These volunteers can provide informative literature in lay terms, emotional support for patients and their families, and hope and inspiration for recovery. It’s often hard for newly diagnosed patients to think that there is a future beyond GBS, and a personal visit from a liaison can make a world of difference in the recovery process. Liaisons also organize and facilitate local chapter meetings, which feature presentations from professionals from all dimensions of the care/recovery process, so that patients leave not only with feeling comforted and cared for, but also more informed about their conditions.
The Foundation has a variety of resources available to help educate both medical professionals and the public about GBS and CIDP. In addition to our informative literature, the Foundation’s Medical Advisory Board is available for free neurologist-neurologist consultation if the treating neurologist is unfamiliar with GBS or CIDP.
We also fund a number of grants for research projects for GBS, CIDP, and variants annually. In the last 10 years we have dedicated over $2 million to research, and we hope to double that in the near future.
Several years ago we added political advocacy to our mission. The Foundation lobbies their local representatives for bills and policies that both directly and indirectly benefit patients. Current bills we are advocating for include increasing funding for the NIH research portfolio, and eliminated specialty tiering for insurance payments to help make the costs of treating these conditions (especially CIDP) more affordable.

4. What is Guillain-Barré Syndrome
What is Guillain-Barré Syndrome? (Acute Inflammatory Demyelinating Polyneuropathy)
Disorder of the Peripheral Nervous System (PNS)
Characterized by the rapid onset of numbness, weakness, and often paralysis of the legs, arms, breathing muscles, and face.
Paralysis is ascending: it travels up the limbs from fingers and toes towards the torso
Severity of cases varies widely; some patients have mild cases, other patients can be fully paralyzed and must be put on a ventilator
Now for some quick background on GBS. Guillain-Barre syndrome is a disorder of the peripheral nervous system, and is characterized by the rapid onset of numbness, weakness, and often paralysis of the legs, arms, breathing muscles and face. Paralysis is ascending, so it general begins in the feet and legs and travels up the body.
Severity of cases varies widely—some patients experiences only numbness and tingling in their lower extremities, while other patients can be fully paralyzed (including loss of vision) and must be placed on a ventilator for breathing support.

5. Cause still unknown, but often preceded by infection
NOT contagious, infectious, or hereditary
EARLY DIAGNOSIS AND TREATMENT IS KEY FOR SHORTENING THE ACUTE PHASE OF GBS!!
Diagnosis: spinal tap or EMG
Treatment: Plasmapheresis and/or IVIg can help shorten the duration of GBS
The cause of GBS is still unknown, but as GBS is an autoimmune disease, it is often triggered by some sort or infection like the flu or food poisoning. However, GBS can be triggered by almost anything: vaccinations, pregnancy, stress, etc.
GBS is not contagious, infectious, or hereditary, so patients and family members need not worry about “catching” it
Rapid diagnosis and treatment is essential to shortening the acute phase of GBS, which tends to last anywhere from a few days to 4 weeks.
Diagnosis is confirmed through a spinal tap and/or EMG, and plasmapheresis and IVIg can often help shorten the duration of GBS

6. GBS: Getting Better Slowly
Recovery can take weeks to years
Many patients must find “new normal”
Stick to PT/OT regimens
Use assistive devices (AFOs)
There’s a common understanding amongst GBS patients that GBS actually stands for “Getting Better Slowly”. Recovery usually takes 6 months to 2 years, with many patients requiring extensive physical and occupational therapy to relearn basic functions, from chewing/swallowing to walking and caring for themselves. Even when a patient is considered “recovered”, many patients still face years of recurrences of pain, numbness, tingling, and fatigue. Patients will have to acclimate to their “new normal”, and will need to make adjustments in their lifestyles to accommodate the long-term effects of GBS. Some patients will require assistive devices such as walkers, canes, or AFOs (leg braces) to help them with mobility. It is key that a patient has a strong support system in place to help them through the recovery process.

7. Thoughts from GBS survivors…
Communication is Key!
GBS patients are fully aware and alert
Paralysis ≠ no sensation
Patients’ nerves are extremely sensitive
A little goes a long way
Personal hygiene, movement, modesty
Even if a patient is fully paralyzed, ventilated, and appear “out of it,” they are still fully aware and alert! Take time to explain their condition and what is happening to them and their families. It is important to find a way for the patient to communicate their thoughts, questions, and fears.
Even though a patient may be paralyzed and experiencing numbness, often nerves are hypersensitive to touch. Even brushing a bedsheet along a foot can be excruciatingly painful. Take time to make sure that patients are comfortable: add extra pillows, turn them often, keep sheets/blankets loose
Go an extra step to help patients feel like themselves again: shave legs/faces, try to get them out of bed and into a chair even if it is only for a 30 minutes, oral care, maintain dignity/modesty Feel free to add your own thoughts/tips here!

8. GBS in Numbers Typical time in ICU is 6 weeks
Affects 1-2 per 100,000 people each year
Typical time in ICU is 6 weeks
3-5% mortality rate
10% to 35% of patients have long- lasting residual effects
This slide is pretty self-explanatory, feel free to just read the numbers aloud.
Mortality rate: very few people die from GBS, and when they do it is usually due to related complications like respiratory failure, cardiac arrhythmias, pulmonary embolism, delay in ventilation
10% are left with significant disability after 1 year
25% of patients need ventilation

9. CIDP Chronic Inflammatory Demyelinating Polyneuropathy
Unlike GBS, CIDP is not self-limiting or spontaneous; gradual sensory loss/weakness over months/years
Early recognition and proper treatment is essential to avoiding a significant amount of disability.
GBS’ “chronic cousin”
Similar mechanisms to GBS; caused by damage to myelin

10. CIDP Over/underdiagnosed frequently Diagnosis: EMG, lumbar puncture
Long-term treatment (regular IVIg infusions)
Help navigating insurance, outpatient care, financial assistance
PT/OT long term in conjunction with treatment
CIDP is frequently over/underdiagnosed or is misdiagnosed as MS or ALS. Because of that, it’s hard to estimate an accurate incidence and prevalence rate for CIDP. Prevalence is estimated to be up to 9 per 100,000 people.
EMG and spinal tap are required to confirm diagnosis in addition to assessing symptoms.
Because CIDP is chronic, patients have special long-term needs. Many patients must receive IVIg infusions every 3-4 weeks to maintain their health. With this comes a lot of other long-term needs including navigating insurance issues, affording treatment, pt/ot and outpatient care, mobility assistance, etc.
At the 2014 Foundation Symposium

11. CIDP in Numbers Average cost for IVIg infusion: $15-20K
Affects 1-2 per 100,000 people each year
Average cost for IVIg infusion: $15-20K
Prevalence: up to 9 in 100,000
You can read through these numbers, but it is important to emphasize is that infusions are incredibly expensive and this can present both a financial and emotional drain on a patient and their family. IVIg is considered a “specialty tier” drug so patients must pay a percentage of the cost, rather than a flat copay. Out of Pocket expenses can easily add up to $40,000 a year. Some patients forgo treatment because they cannot afford it, and we have resources that we can connect patients with to help with this.
Many patients need IVIg every 3-4 weeks to maintain strength
Left untreated, 30% of patients progress to wheelchair dependence
With proper treatment, 90% of patients can walk without aid

12. We are here to help! Resources for Patients
Chapter meetings
Personal visits
Educational materials
Symposia
Centers of Excellence
Resources for Medical Professionals
Medical Advisory Board Consultation
Resource Referral
Educational Resources
We are here to help! The Foundation has a number of resources available to help patients receive the care and support they deserve. Foundation liaisons are available to visit newly diagnosed patients in the hospital and run local support group meetings. We also work to ensure that every patient understands their conditions fully by offering informative literature and educational events such as our biennial International Symposia. We also have 25 Centers of Excellence around the world that are fully trained and equipped to handle GBS and CIDP cases.
We also have resources available for medical professionals. We understand that these conditions are very rare, and it is common for doctors to be unfamiliar with how to diagnose and treat them. Because of this, the members of our Medical Advisory Board are always available for free, neurologist to neurologist consultation if doctors would like to run their case by someone well-versed in treating these conditions. We also have a number of other resources we can connect you or your patients with if they need extra assistance. We have special educational resources for medical professionals and our Symposia are also open to professionals who want to learn more about our conditions.

13. Thank You!
Here is when you thank everyone for their time and answer any questions. Be sure to leave them all with pens, literature, and information on how to contact you!