Advocacy On & Off Capitol Hill
By Chelsey Fix, Advocacy Manager I blinked and it turned into November! It seems like no time at all since we started this important advocacy work during Awareness Month in May, but I have to remind myself that it has been 6 months! Besides the essential work we have done together to advance HR 2905…
Announcing Keynote Speaker Congressman John Garamendi
We are proud to announce our Keynote speaker; Congressman John Garamendi United States Representative & GBS|CIDP Foundation International’s Legislator of the Year in 2015. John, with his own personal connection to GBS, continues to be a Champion for GBS and the GBS|CIDP Foundation.
How A Bill Becomes A Law (in the US)
By Chelsey Fix, Advocacy Manager It’s been over 20 years since Schoolhouse Rock released its last video, which makes me think that we all need a refresher on the process by which a bill becomes a law! As a throwback, enjoy everyone’s favorite Schoolhouse Rock civics lesson by clicking here. As a recap, that I…
Medicare IVIG Access Enhancement Act
In Response to NY Times article, “What is the Blood of a Poor Person Worth?”
Imagine the shock and helplessness of seeing your child’s body suddenly growing weak, clumsy, and unable to walk, or even stand; the fear that they may never live a normal life, or even survive this terrifying, disabling disorder.
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.
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…
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…
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….
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…
Marketplace Access Project Applauds Bipartisan Letter from 181 Members of Congress Urging HHS to Protect Life-Saving Charitable Patient Assistance
Letter Introduced by Reps. Kevin Cramer (R-ND) & Doris Matsui (D-CA) Seeks to Protect Quarter of a Million Americans Who Depend on Charitable Assistance for Access to Critical Healthcare WASHINGTON, D.C. (May 31, 2017) – The Marketplace Access Project (MAP), a group of leading national patient advocacy organizations dedicated to protecting non-profit insurance premium and…
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Largest Ever CIDP Clinical Study Completed
Largest Ever CIDP Clinical Study Completed PATH study evaluated subcutaneous immunoglobulin efficacy and safety for treating Chronic Inflammatory Demyelinating Polyneuropathy KING OF PRUSSIA, Pa. – 01 March 2017 – Global biotherapeutics leader CSL Behring announced today that it has completed the largest ever Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) trial, known as PATH (Polyneuropathy And Treatment…
Our Executive Director, Lisa Butler’s Interview in PPTA Winter Newsletter
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…
7th Interlaken Leadership Awards
Interlaken Leadership Awards The Interlaken Leadership Awards support original research in the field of neuroimmunology. Investigators whose proposals are approved by the review committee will receive monetary grants and/or drug supply. The size of the individual grants is not predetermined, in order to accommodate a wide variety of investigator needs. However small innovative trials…