Topics of Interest

Breaking News in Dallas, TX – Travis Frederick of Dallas Cowboys diagnosed with GBS

In response to the breaking news in Dallas this morning regarding Travis Frederick of the Dallas Cowboys, and his recent Guillain-Barré Syndrome diagnosis, the GBS|CIDP Foundation International issues the following statements, for those seeking clarity and more information.

GBS affects 1-2 in 100,000 individuals; it is an inflammatory disorder of the peripheral motor and sensory nerves characterized by rapid onset of numbness, weakness and often leads to paralysis. GBS can occur at any time without warning; it affects both genders and all ages and ethnic groups. With GBS, the body’s own immune system which usually fights infection, attacks itself causing damage to the peripheral nerve covering called myelin. It varies greatly in severity from mild cases of brief weakness to a devastating and life threatening illness with complete paralysis and need for respirator support. After the peak of damage, the nerves usually undergo a slow healing process and are remyelinated or repaired; during this process the patient regains strength and sensation. Care involves use of general supportive measures for the paralyzed patient, and also methods designed to speed recovery especially for those with major problems such as an inability to walk. Plasmapheresis (a blood “cleansing” procedure) and high dose intravenous immune globulins (IVIG) are often helpful to shorten the course of GBS. Recovery can take months to a year or more. Usually a neurologist with expertise in neuromuscular disorders is consulted for patient evaluation and management. Kenneth Gorson, MD, Chairman, Global Medical Advisory Board

The GBS|CIDP Foundation International provides support services with a vision that every person affected by GBS, CIDP, MMN and variants has early access to the accurate diagnosis, affordable treatments and dependable support services. The Foundation serves the community through patient support with a global network of volunteers, healthcare providers, researchers and industry partners, through providing education for patients, care-givers, and clinicians, through funding research and advocating at the federal and state levels to influence informed decisions to benefit the patient community. The Foundation, founded in 1980 supports 40,000 members worldwide. GBS-CIDP.orgLisa Butler, Executive Director

The GBS|CIDP Foundation International wishes Travis the very best in his recovery. More information can be found on this website or by calling the Foundation office at 610-667-0131.

 

FDA approves CSL Behring treatment for CIDP

The Food and Drug Administration granted marketing clearance Friday for Hizentra, a treatment for chronic inflammatory demyelinating polyneuropathy (CIDP) developed by CSL Behring.  Lisa Butler, executive director of the GBS/CIDP Foundation International, said “The approval of Hizentra offers patients who were once burdened by traveling to the infusion center or hospital the flexibility to self-administer their treatment at a time, place, and on a schedule that’s convenient for them.”

Read Full Article in Philadelphia Business Journal, March 16 2018.

Clovis Walk & Roll Breaks Record!

The GBS|CIDP Foundation International is delighted to share this important Walk & Roll update! On March 10 at Dry Creek Park in Clovis, California, GBS volunteer and Clovis Walk Chairman, Robert Vasquez hosted an exciting Walk & Roll fundraising event with a record-breaking 300 walkers in attendance!  Thus far the event has raised over $6,500 (and counting) to support GBS|CIDP research. The festivities included a one-mile walk, presentations from Robert and attendees, a post walk celebration and fundraising raffle. Nearly 15 affected patients were in attendance along with GBS San Francisco Walk Chairman, and GBS Foundation Executive Board Member, Russ Walter.  The Foundation would like to express a sincere gratitude to Robert, his family and community, and all of the walk participants. Every step makes a difference to those living with GBS|CIDP or a variant of the condition! Click here for more information about our Walk & Roll Program, or to find a walk near you!

Clovis Walk and Roll image

Charity Navigator Names GBS|CIDP Foundation as ‘Charity Worth Watching’

10 Charities Worth Watching

Many of America’s most effective charities are also household names. But some well-known charities are less effective than you’d think, while a number of lesser known charities are truly exceptional. These 10 charities all operate on less than $2 million a year, but they all earn a four-star rating from Charity Navigator. We encourage you to learn more about them.

Rank Charity Overall Score
1 Just Detention International 100.00
2 Boys & Girls Clubs of Nassau County Foundation 100.00
3 GBS/CIDP Foundation International 100.00
4 Environmental and Energy Study Institute 100.00
5 Boys & Girls Clubs of Indian River County 100.00
6 Arthritis National Research Foundation 100.00
7 Family Health Partnership Clinic 99.80
8 Boy Scouts of America, Long Beach Area Council 99.67
9 USO of Missouri 99.63
10 Center for Responsive Politics 99.58

View on Charity Navigator

Announcing the 2017 GBS|CIDP Foundation Grant Awardees

2017 GBS|CIDP Foundation Grant Awardees

(#1) Title of the project: Enhance Peripheral Nerve Repair by Modulating Macrophage Subsets

Investigator:

Gang Zhang, M.D; Ph.D
Assistant Professor of Neurology
University of Texas, Health Sciences Center at Houston

Synopsis:

Intravenous immunoglobulin (IVIg) is now the first-line therapy for Guillain-Barré syndrome (GBS). However, there are many disadvantages including high cost, supply shortages, and multiple side effects that are usually associated with high dose and long infusion time of IVIg. Therefore, new therapeutic strategies that can limit the nerve injury during the acute phase of the disease and enhance repair during recovery period are highly desirable. It is in this context we propose a novel strategy of modulating macrophage polarization (promote M2 polarization) for treating GBS.


(#2) Title of the project: Probing the role of skin biopsy in CIDP nodo-paranodopathies

Investigator:

Raffaella Lombardi, B.S., Fondazione IRCCS Instituto Neurologico C. Besta, Milan, Italy

Co-Investigators:

Jerome Devaux, Ph.D,

Diego Franciotta, M.D., Ph.D,

Giuseppe Lauria, M.D.1

Synopsis:

IgG4 antibodies against some proteins at the node of Ranvier, anti-neurofascin 155 (Nfasc155) or anti-contactin 1 (CNTN1) have recently been identified in the serum of a subset of CIDP patients. Identification of specific changes in myelinated dermal skin nerves and correlation with clinical course and serological data are unknown. We aim addressing these issues to provide new biomarkers of disease activity and patient stratification. 


(#3) The Ernest Hayden Award:
Title of the project: Flavivirus and Arbovirus associated Guillain-Barré syndrome in South and South-East Asia.

Investigator:

Dr. Thirugnanam Umapathi

Department of Neurology, National Neuroscience Institute (NNI), Singapore,

Co-Investigators:

Dr Say Saysavath, Mittaphab Hospital; Dr Somchit Vorachit, Setthathirath Hospital,Vientiane,

Laos. Dr Hoang Nghia, Vietnam 175 Hospital, Ho Chi Minh City, Vietnam,Dr Surat Tanprawate, Chiangmai University, Thailand, Dr Mohammad Wasay; Dr Sara Khan, Aga Khan University, Karachi, Pakistan, Dr Terrence Thomas, KKH Children’s Hospital, Singapore,Dr Hugh Willison, Glasgow University, UK Dr Bart Jacobs, Erasmus University, Rotterdam, Netherlands

Dr Ooi, Eng Eong, Duke-NUS, Singapore, Dr Lisa F.P. Ng, A*Star Singapore.

Lao-Oxford-Mahosot Hospital Wellcome Trust Research Unit’s (LOMWRU), Vientiane, Laos

Synopsis:

This is a prospective, observational multi-center study of GBS in six S SEA countries. GBS patients and hospital, community controls will be tested for evidence of recent infection and serological response to previous/coinfections with flavi/arbovirus.

For information regarding Grants please contact Lori.Basiege@gbs-cidp.org.