Topics of Interest

In Response to NY Times article, “What is the Blood of a Poor Person Worth?”

By Lisa Butler

(February 1, 2018) 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.  Imagine being greeted with the puzzlement of healthcare professionals, a battery of tests, misdiagnosis, needles, uncertainty and inconclusions – all the while the condition worsening before your eyes, and this person, this child, slipping right through your fingers.  How will this all end? I truly hope for you, for the sake of your family, community and loved ones, that this feeling, this picture I have painted, stays only in your imagination. And that you never spiral down to the level of desperation brought on by a very rare and disabling condition, like I did.

On January 28th, 2001, my son was diagnosed with Guillain Barre Syndrome after ten days of rapid physical decline and mobility. He was admitted to ICU, diagnosed and was treated with Immune Globulin, a plasma product.  My entire family was given a gift; the life-saving gift of plasma donation. And although he left the hospital strapped to a wheel chair, lacking the strength to even sit upright, he began a recovery that would progress and regress with a second stay in ICU and a second round of immune globulin. Source plasma is used to manufacture life-saving bio-medications for people living with rare, serious, and chronic diseases and will allow those individuals to live normal, healthy lives. In fact, Source plasma donors have safely donated – at a conservative estimate – more than 500 million times over the past few decades, saving countless lives. Thanks to these dedicated plasma donors, our son did recover, he is now part of the 5% of patients in the rare disease community of 7,000 that has a therapy.

When I read the article “What is the Blood of a Poor Person Worth?”, on February 1, published in The New York Times, I was struck by reference to the plasma donors, as “desperate people”, and the lack of information regarding how these people actually have given a much better quality of life back to so many. To me, there is no price too high for the value of my son’s life, his well-being, his chance to go on, and to go far.  And although, the debate continues, how much to pay? Why, to whom and how often? … I feel the article lacked balance in its portrayal of Source plasma donors, who come from all walks of life, cultures, places and stories. These people are heroes to many, and should know that their choices have made a monumental difference in the lives of others. As the mother of child stricken with GBS, and the Executive Director of the GBS|CIDP Foundation International, an organization whose 44,000 members depend on the Foundation to fight for access to these life-saving treatments, I offer an infinite thank you to all donors, from all corners of the world.

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