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…
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…
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…
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…
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…
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…
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…
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…
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…
Dr. Peter Donofrio, Chairman, Global Medical Advisory Board, GBS|CIDP Foundation International, Receives AANEM Distinguished Physician Award
The American Association of Neuromuscular and Electrodiagnostic (AANEM) has awarded the 2020 Distinguished Physician Award to Peter Donofrio, MD, for his distinguished service as a clinician, educator and his overall support of AANEM.
Your Donations in Action
In 2016 The GBS|CIDP Foundation awarded a research grant to Eduardo Nobile-Orazio, MD, PhD, FAAN, Professor of Neurology Neuromuscular and Neuroimmunology Service at Milan University. Dr. Nobile-Orazio’s 2016 study titled: An Italian Multicenter Network for the diagnosis and therapy of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and of its variants, contributed to the 2019 article: Risk factors for chronic inflammatory demyelinating polyradiculoneuropathy (CIDP): antecedent events, lifestyle and dietary habits. Data from the Italian CIDP Database., published by the EAN (European Academy of Neurology). Update: GBS|CIDP Foundation Research 2016 Grant Recipient, Dr. Eduardo Nobil-Orazio, published in Journal of Neurology, Journal of Neuroimmunology, and Wiley Online Library, and EAN.
Announcing 4 New Centers of Excellence, including first in Pediatric Care
Our Global Medical Advisory Board has set standards for what they consider to be excellent medical centers for the diagnosis and treatment of GBS and CIDP, MMN and related neuropathies. Based on levels of expertise, available treatments, facilities, and research capabilities, these are the medical centers that we can unequivocally recommend as “Centers of Excellence”….
APLUS Statement on the State of Plasma
The American Plasma Users Coalition (APLUS) recognizes and applauds the recent statements from the White House that emphasize the importance of plasma and how essential plasma donors are to the healthcare system. This statement rings true for convalescent plasma that may help countless patients battling COVID-19 and is especially true for people all over the…
INCbase
INCbase Update Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare disorder that affects different people in different ways. The symptoms, treatment response, and disease course may vary from person to person, or even in the same person at different stages of the disease. As previously reported in 2017, INCbase is a study that intends to…
Advocacy Action Alert: Ask Your Senator to Support Charitable Assistance
Charitable non-profit patient assistance foundations help thousands of Americans afford their health care every year, particularly those who are living with expensive chronic and rare diseases. Recently, Sen. Kevin Cramer of North Dakota developed a provision that would allow third-party groups (like patient assistance organizations) to pay premiums on the behalf of patients during the…