Fall 2015

Jump In! The Water’s Fine…

Picture yourself swimming the length of a pool. Arm-over-arm, each stroke pulling you smoothly through the water. Your strong legs are rhythmically beating the wake behind you into a splattering froth. You take a deep breath and…Stroke! 2,3,4…stroke! 2,3,4.

You’re as graceful as a dolphin but as fierce a barracuda. Each set of breaths, strokes and kicks propels you through the next ten meters. Faster, stronger, faster…faster…stroke! 2,3,4. “You’re living your dream. You’re going to win..Push! Push!,” is the mantra pulsing through every cell in your body. You’re exhausted but years of mental and physical training won’t let you quit. Stroke 2,3,4 fifteen meters to go. Your chest expands, Breathe! 2,3,4 ten meters, arms are burning, legs are kicking relentlessly. Five meters, three meters, one meter, reeeeach…FIRST PLACE!!

Two days later you get GBS and all your dreams sink to the bottom of the pool. Juan Castillo-Vazquez is a remarkable young man. His life, like yours, was sucked into a whirlpool of weakness, fatigue, paralysis, fear and despair. Juan is remarkable, like you, because that didn’t stop him. He, like you, chose to rise up from the depths.

This past August, he flew to Toronto with the Cuban National Team to compete at the 2015 ParaPan American Games and BROKE THE WORLD RECORD for the 100 meter butterfly! Need we say more?

nwslt_swimJuan swam his race in his lane, alone, but he trained and received support as part of a team. GBS, CIDP and other variants such as MMN have brought us together and we are now family. So, no matter where you are in your recovery process keep swimming–and make some room because we’re jumping in with you!

Advocacy

2014 marked the second year of the Foundation’s organized efforts with advocacy. Together with our partner, Health and Medicine Council of Washington, DC, we have a targeted approach to improve the lives of patients by informing and influencing policymaking processes through individuals and organizations in DC.

We seek to educate the legislators making decisions which affect the Foundation’s community. In 2014, we participated in our second annual Capitol Hill Day with 15 constituents making 20 visits on Capitol Hill. We followed in 2015 with a group of 30 making 40 visits.

We have rewritten the advocacy pages on our website and have a newly formed Advocacy Action Committee made up of leaders from our volunteer community who participate in quarterly advocacy activities. We need our voice to be heard! The following are some of the initiatives we are currently supporting:

Accelerating Biomedical Research Act (S. 318/H.R. 531): seeks to systematically increase funding for the National Institutes of Health, which will expand research portfolios on various conditions (including GBS, CIDP, and MMN).

American Cures Act (S. 289/ H.R. 2104): seeks to systematically increase funding for all medical research programs and activities across the federal government (including the Veterans Administration and the Department of Defense).

The Patients’ Access to Treatments Act (H.R. 1600): seeks to ensure patient access to innovative treatments by reducing high out-of-pocket expenses associated with coinsurance requirements through private insurance plans.

Part D Beneficiary Appeals Fairness Act (S. 1488/H.R. 2624): allows Medicare Part D participants to have relief from high out-of-pocket costs for innovative treatments by allowing beneficiaries to formally request an exception from cost-sharing requirements.

 

 

Research

In the past 11 years, the GBS|CIDP Foundation has dedicated more than $2,000,000 towards sponsoring over 30 research grants! We fill an important need in the GBS, CIDP, and related disease research arena by offering seed money for research that may lead to NIH funded projects. Annually, grants are reviewed by our Medical Advisory Board and then recommended to the Board of Directors for final acceptance.

In 2014, we awarded our first Benson Fellowship for Neuromuscular Research to Dr. Ruth Huizinga. Dr. Huizinga aims to understand the causal relationship between preceding infections and anti-neuronal antibodies.

In 2015, we awarded our first Mazawey Fellowship to Dr. Marielle Pruppers. Dr. Pruppers is researching anti-MAG peripheral neuropathy, a rare CIDP variant. This fellowship was established by Louis T. Mazawey JD, a patient, to further understanding, diagnosing, and treating of Anti-MAG.

Other 2014 grants involve the following:

  1. Led by Dr. Isabel Illa at De La Santa Creu in Barcelona, this study looks to identify different genetic subgroups of CIDP.
  2. In Bangladesh, where the incidence rate for GBS is much higher than the global average, Dr. Zhahirul Islam and his team are working on developing new outcome measures for GBS patients in low-income countries.
  3. At the University of Chicago, Dr. Betty Soliven is investigating how different types of immune cells contribute to disease severity in CIDP patients.
  4. Dr. H.H. Lopez in Argentina is attempting to better understand the signaling pathway involved in neuron growth inhibition.

The Foundation has also supported the International Guillain-Barré Outcome Study (IGOS), the largest and longest prospective trial designed to collect extensive data in a systematic manner from patients affected with GBS. This study involves over 200 medical centers in more than 20 countries. As of this publication, over 1,000 patients have enrolled!

 

 

 

 

Education

We are committed to providing patients, families, and medical professionals with the most current and relevant information possible.

In 2014 we re-launched our website in an intuitive, user-friendly format. Our homepage now features our latest news, an events calendar, and the amazing stories you have shared. We recently added a section on our homepage which highlights newly added material. We also added pages on variants such as multifocal motor neuropathy (MMN) and anti-MAG peripheral neuropathy.

In October 2014 we hosted our 13th (and largest ever) International Symposium in Orlando, FL with over 600 people in attendance. This symposium featured separate tracks for GBS, CIDP, and MMN patients. Additionally, we had thirty healthcare professionals present twenty-nine sessions and workshops.

Also in 2014, we produced 5 informational videos on the following topics: adult GBS, pediatric GBS, CIDP, MMN, and our Centers of Excellence. All are available for viewing on our website.

websiteWe continue to publish The Communicator, our quarterly newsletter, which always includes relevant medical articles, many written by our own Medical Advisory Board. In July 2015, we introduced our first digital newsletter, The eCommunicator, which allows us to communicate with our members more frequently in an eco-friendly manner.

In cities across America the Foundation sponsors an informational workshop called “Managing your CIDP” that outlines the history, diagnostic protocols, and treatment strategies of CIDP.

 

 

 

 

 

Our professional partners are critical to us as we endeavor to share the most relevant and current information. These relationships include:

NORD: National Organization of Rare Disorders

PNS: Peripheral Nerve Society

IgNS: Immunoglobulin Nursing Society

PPTA: Plasma Protein Therapeutics Association

AANEM: American Association of Neuromuscular & Electrodiagnostic Medicine

 

 

Support

The GBS|CIDP Foundation is committed to supporting patients and their families on their road to recovery.

  • The Foundation office receives over 100 inquiries for new information, WEEKLY.
  • We have 105 US Liaisons and 43 US Points of Contact. To date in 2015, we have had over 79 chapter meetings across the country.
  • We have 58 global volunteers in 47 countries around the world.
  • We invite over 24,000 patients and caregivers to Chapter Meetings annually.
  • In addition to our paper newsletter, we now send our “eCommunicator” to over 16,000 people worldwide.
  • On Facebook, we see over 3,000 hits weekly and have over 7,300 “likes.”
  • We are currently creating a database of patient-referred medical professionals. This is in addition to the 250 recommended
    neurologists already in our database.
  • We have 25 Centers of Excellence around the world.

 

daworld2
Areas with active Foundation Representation