Foundation News

An Open Letter to Dr. A.S. Fauci, Director NIAID, NIH

(Please see the following open letter statement authored by members of the GBS|CIDP Foundation International medical community as referenced.) As clinician/scientists who have spent careers studying GBS, we are concerned that your statement on the “New Normal” television show about GBS and the COVID vaccine will have unintended consequences. Your statement is already all over…

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GBS|CIDP Foundation staff & patients collaborate with FDA

By Lisa Butler In 2020 as the Foundation worked with the FDA, for the first time, what I feel is most notable – and praiseworthy –  is their straightforward adherence to science, and their tremendous efforts to bring the patient perspective into the decision-making process. I feel even more confident in the leadership of the…

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Giving Tuesday

GIVE. #givingtuesday December 1, Giving Tuesday, kicks-off the ultimate season of kindness, hope and caring for our global community. A donation to the Foundation is forever appreciated, but there are so many ways to give, big and small. We ask this year, a year that has brought such unprecedented challenges, that you join us, in…

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2018 GBS|CIDP Foundation Research Grant Recipient Publishes Update in Journal of Neurology, Neurosurgery & Psychology

CSF sphingomyelin: a new biomarker of demyelination in the diagnosis and management of CIDP and GBS Principal Investigators: Luana Benedetti, MD, PhD  and  Lucilla Nobbio, PhD, University of Genova, ITALY CIDP and GBS are immune-mediated neuropathies characterized by strong heterogeneity in terms of clinical manifestations, prognosis and response to treatment. They are treatable diseases and early…

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Foundation Hosted Patient Listening Session on Guillain-Barre Syndrome with The FDA

On September 29, 2020, the GBS|CIDP Foundation International organized a patient-led listening session on Guillain-Barre Syndrome (GBS). More than 30 members of various branches within the FDA logged on to the virtual meeting to hear about patients’ experiences with GBS. The FDA’s role was to listen and learn about what life is like during and…

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Plasma Please

Plasma is the straw-colored liquid portion of blood that contains proteins that are essential for the human body, including antibodies and clotting factors. Antibodies (also known as immunoglobulins) play an important role in health and illness. Many patients living with CIDP, MMN or Variants regularly receive intravenous immunoglobulin (IVIG) subcutaneous immunoglobulin (SCIG) to treat the…

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Building Muscle at Any Age

By Dr. Julie Rowin A publication from Dr. Julie Rowin’s Blog Post found at: julierowinmd.com The benefits of maintaining muscle mass at any age cannot be underestimated.Here’s why: Muscle is involved in brain function in a big way. Muscle directly communicates with the brain through chemicals and messengers such as brain-derived neurotrophic factor (BDNF). These chemicals…

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Hey doc, are you sure this is CIDP?

By Jeffrey A. Allen MD,University of Minnesota It’s ok to ask the question. Whether you’ve had the diagnosis for a day or a decade its ok to ask. You should ask. Do my symptoms make sense? Are my test results what you would expect for CIDP? Have other explanations been explored? Should I get a…

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How Can Participating in a Clinical Trial Help Me? Live Panel

Join us October 29, 2020 We are pleased to announce a new patient education program about clinical trials for patients with CIDP and GBS, that will air live on October 29th at 12PM ET on NeuroCareLive. Join the multidisciplinary panel comprised of a GBS-CIDP representative, a person who has participated in a clinical trial, and a neurologist in…

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2021 Symposium Date Announcement!

Dear Friends,We are delighted to announce the new date for our 16th Biennial Symposium.JOIN US! OCTOBER 7-9, 2021!We will adhere to all CDC & WHO recommendations at the time of this event. Your health & safety is of utmost importance. Reservations at the Hilton are not yet open! We will send out the link to…

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The Sport of Staying Home

By Kaitlyn Lorant PT, DPTYTA Committee Member For individuals with GBS or CIDP, rehabilitation is of the utmost importance. While in quarantine during the COVID-19 pandemic, it can be daunting to create new and engaging activities to maintain strength, flexibility, and aerobic endurance. This article compiles a list of some fun, yet feasible exercises and…

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GBS|CIDP Foundation International Dedicates October to Advocacy “Month of Action”

[CONSHOHOCKEN, PA] — GBS|CIDP Foundation International, August 31, 2020 This October, The GBS|CIDP Foundation International is encouraging patients and caregivers affected by Guillain-Barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP,) or variants of the condition such as Multifocal Motor Neuropathy (MMN), to join a virtual “Month of Action” advocacy campaign. Opportunities for participating in “Month…

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Pagination