Spring 2016

GBS|CIDP Symposium 2016

Greetings from Narberth!

We are excited to announce that the registration for our 2016 Symposium in beautiful San Antonio, Texas is now open!

This symposium will take place in the heart of downtown San Antonio, a city rich with culture and history. We will stay at the Hyatt Regency, San Antonio (Online Booking Available Now!) which is a 16-story garden atrium hotel located eight miles from the San Antonio International Airport, and across from the historic Alamo. The Hyatt is set on the centerpiece of the city, the Riverwalk — a two-and-a-half mile cobblestone path (recently updated to be ADA compliant) along San Antonio River. Enjoy a riverboat cruise and the shops, sidewalk cafes, restaurants, and other attractions!

Symposium 2016 will feature a wide array of presentations and workshops led by our best medical professionals, and will offer a unique opportunity for those affected by GBS, CIDP, and variants to meet with other patients and families from around the world.

Our Symposium schedule ‘at a glance’ is available to view here.

(Subject scheduled to change – more sessions & speakers to be added!)

CLICK HERE TO REGISTER NOW!

(Please note that registration does not include travel accomodations or hotel lodging. 

All On-Site (day of) Registration will be subject to an additional $25/per person fee)

Need Help? Call the Foundation (610) 667-0131 (Toll Free: 866-224-3301) or email us!

What Emergency Physicians Should Know About Guillain-Barré Syndrome

What Emergency Physicians Should Know About Guillain-Barré Syndrome

By Joel Steinberg, MD, PhD

Dr. Steinberg is a hospitalist for Cooper University Hospital in Camden, New Jersey.

As he was recovering from GBS, he helped found the GBS/CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) Foundation International.

GBS Stats and Facts

•   It is rare, affecting about 1–2 persons per 100,000 each year.

•   Mortality rate is about 3–5 percent, usually from  cardiopulmonary  complications.

•   Approximately one-third of patients will require intubation and mechanical ventilation.

•   Up to 20 percent of patients are left with significant, lifelong problems.

•   Bradycardia, although rare, can require a temporary pacemaker.

Guillain-Barré syndrome (GBS) is a rare and potentially catastrophic paralyzing disorder of the peripheral nerves. It is also known as Landry’s ascending paralysis, postinfectious polyneuropathy, and acute infl tory demyelinating polyneuropathy. The emergency physician is often the fi st to see GBS patients as the illness evolves. Early diagnosis, or at least suspicion of GBS, is important to provide a better outcome as delayed treatment can lead to unrecognized failing respiration and life-threatening dysrhythmias. Given that GBS is rare, presents with the common chief complaint of weakness, and has no simple diagnostic lab test for its confirmation, it is an easy diagnosis to miss.

Clinical Features

Here’s a list of clinical features to raise suspicion of GBS when a patient presents to the emergency department:

  • Relatively new onset of weakness, within a day to three to four
  • Symmetrical weakness rather than unilater
  • Most typically, an ascending pattern of weakness (eg, a waddling gait; difficulty climbing stairs; difficulty rising from the bed, chair, or floor).
  • New pain of the thighs and/or low back; pain can be an early—and even the first—symptom of
  • Early dysesthesias (eg, numbness, tingling, and formications of the feet, hands, and distal limbs—even the face or gums).
  • Absent or diminished deep-tendon reflexes, a hallmark of
  • Elevated spinal fluid protein without elevated cerebrospinal fluid cells, another hallmark of
  • Recent viral or other infection (eg, upper respiratory infection, sore throat, diarrhea), seen in two-thirds of GBS pa

People of any age can develop GBS, from babies to seniors. If you are unsure what’s going on, it may be safer to admit the patient and get a neurology consult. A confirmatory nerve conduction study/electromyography study will likely be planned. Urgent diagnosis is important since early treatment with high-dose intravenous immunoglobulins or plasma exchange can often shorten the disease’s course if started within two weeks of onset of symptoms. Corticosteroids have not been found beneficial and may even lengthen its course.

 

 

Look Who’s Walking Now….Houston!

Look Who’s Walking Now….Houston!

By Megan McCulloch

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After a long evening at Houston Medical Center visiting my mom who was recovering from another relapse of CIDP, I felt helpless. When I got home, I checked my mail to find a postcard from the GBS|CIDP Foundation regarding a Walk & Roll in Dallas, Texas coming up in May 2015. I was excited and encouraged to learn about the Foundation’s community events to raise awareness and  research funding. I was eager to help patients affected by GBS, CIDP and variants receive the cure they desperately need. I excitedly checked the Walk & Roll website to see when a Houston Walk & Roll was scheduled, but I was surprised and disappointed not to see Houston listed as a city hosting a walk. I called the Foundation the next morning to find out why and was told that there was no walk because no one had volunteered to plan one in my city. This was it – it was my opportunity to do something to help my mom and those like her who are afflicted. I simply said, “I’ll do it!”

*Spoiler Alert – We beat our goal!*

I first had to get a planning committee formed. This started with the Foundation connecting me with someone else in my area who was also interested in having a Houston Walk & Roll. From there, the two of us asked our friends and family to also be part of this ambitious committee. We started by picking a place and date, with our biggest consideration being attendance. We wanted to be sure we picked the best day and an inviting venue to attract the walkers we needed to reach our goal of raising $15,000. The Foundation supplied me with a compilation of tools, including a step by step guide on how to plan and marketing materials that would be mailed out to the Houston area. I also created a Facebook event page to post updates of the event and the direct link to register to participate in the Walk & Roll. This was a great place to reach those who were not already part of the Foundation. We had people inviting so many friends from all over Texas, and even the surrounding states to the Houston event. One thing we did on our page leading up the event was a week-long trivia game (with prizes!) asking various questions related to the Foundation and facts about GBS, CIDP, and variants. This enabled us to help raise awareness to those that might not have the background on why this walk was so important to our community.

It was essential to the committee that we plan not only a successful event, but also a memorable one that would appeal to all ages. The committee decided that creating a fun theme for the Walk & Roll would allow our walkers to have fun while at the event. We decided to create a super hero theme to honor the strength of the GBS and CIDP patients. We asked the walkers to come dressed in their best super hero gear – and boy, they did not disappoint – everyone came dressed!

One of the tools the Foundation gave me was a sponsorship packet with all the details a company needed to make their decision to sponsoring our event. This made the conversations with companies effortless and allowed us to get two sponsors in addition to the national sponsors, totaling $3,000 towards our goal. We also had many companies want to give in-kind donations, such as gift certificates to their restaurant and hotel. We did not want to turn these donations down, so we opted to host an onsite raffle during the walk with these items to help raise additional funds. Once word got out we were hosting a raffle, additional donated items came flooding in, including jewelry, an autographed baseball, Super Hero Build-A-Bears, and gift baskets. One of most memorable donated items was a photo booth that matched our theme where the walkers could capture their memories that day all dressed up (there was rarely a time when people were not using the booth).

Waking up the day of the event with a looming storm from Hurricane Patricia on its way, everyone on the committee wondered just how the day would go. To our surprise, it was beyond our expectations! We started the day at just under 100 registrations and fundraising at $13,500 – so close to our goal! We kept a fundraising thermometer posted that we updated throughout the walk in hopes of reaching our goal of $15,000. We had so many additional people come and register on site (134 total registrations!), I had to postpone my welcome speech to allow everyone to check in (and buy raffle tickets) before we kicked off the event. After waiting as long as I could, and $40 short of our goal, I welcomed everyone to the event. I ran through how the event would go, giving the option to stay under cover since it was raining and announcing where we stood on fundraising. Once it was announced we were $40 short, we immediately had two people with $20 bills walk up and make the donation we needed. I broke down in tears at how inspiring the Houston community was in coming together, and how fulfilling it was to see our goal met in front of those that need it most. And if that was not moving enough, everyone still walked in the rain to show their support! The committee, volunteers, and I were so taken back by the fellowship that day. We never realized just how meaningful hosting the first Houston Walk & Roll would be.

“The 2015 Walk & Roll was not only well organized, it was extremely family friendly and inspirational. I am so glad I was able to attend and support this organization. The park location was also a big plus to the event.” – Kathy, Victoria, TX

 “The Walk & Roll was overwhelming and inspiring to be surrounded by so many people in my same situation; it can feel so lonely at times and to see and be a part of the crowd was such a wonderful feeling. I am so thankful for these events being put together. It is one thing to have a digital community, but I will never forget the feeling of walking up to the pavilion and seeing so many people gathered together for our cause.” – Lisa, Austin, TX

 “The support from the Foundation and the experience of the Walk is one that will stay with me forever on this journey of life. Being sick is not easy, but having a community who bands together makes the battle worth fighting. Despite the weather trying to bring us down, it was an overall success. My family and friends enjoyed it so much and look forward to next year!” – Leanna, Sugar Land, TX

Even after the event was over, people continued to donate money to the Houston Walk & Roll until we reached a phenomenal final total of $19,841. All our sponsors have expressed their anticipation of and commitment to the 2016 Houston Walk & Roll. Being part of this incredible event was a fantastic experience. I cannot express enough how grateful I am to have received that postcard when I did. I may not be able to cure GBS or CIDP, but I am delighted that I found a way to support a cause that could one day find cure for those afflicted.

Interested in attending Houston’s 2016 Walk? Find out more here!

 

GBSICIDP Foundation International Update on Zika Virus and Onset of Guillain-Barré Syndrome

NARBERTH, Pa., Jan. 26, 2016 /PRNewswire/ — The GBS|CIDP Foundation International and its Global Medical Advisory Board is closely monitoring the suspected link between the Zika virus and the onset of Guillain-Barré Syndrome (GBS).

GBS is a rare inflammatory disorder of the nerves outside of the brain and spinal cord with an incidence rate of 2 per 100,000 individuals.  The syndrome is characterized by a rapid onset of numbness, weakness, and often paralysis of the body.  It is an autoimmune disorder usually preceded by a viral infection.

Recent reports from Brazil suggest the Zika virus may cause an increase in cases of GBS.  According to the United States Centers for Disease Control and Prevention the Zika virus is spreading in Latin America and other countries through mosquitos.  The virus includes symptoms of fever, rash, conjunctivitis and headache.

“The reports on Zika virus and GBS now coming from South America follow those from French Polynesia in Dec 2013,” say members of the GBS|CIDP Foundation’s Global Medical Advisory Board.  “We are in touch with doctors in South America and doctors from the CDC who are investigating this now. They have offered whatever assistance is needed given their expertise. At the moment it seems that Zika virus is one of many agents that can lead to GBS, but we eagerly await more information.”

The GBS|CIDP Foundation International is the preeminent global non-profit organization supporting individuals and their families affected by Guillain-Barré syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related syndromes through a commitment to support, education, research, and advocacy.  The Foundation has more than 35,000 members throughout 47 countries and has a 26 member Global Medical Advisory Board comprised of the world’s leading physicians in peripheral neuropathy research and patient care.

Additional resources:

For additional information, please contact:

Lisa Butler, Executive Director
(610) 667-0131
lisa.butler@gbs-cidp.org
gbscidpfnd.wpengine.com

From the Executive Director

Lisa Butler, Executive Director

Dear Friends,

I am honored to have been appointed as Executive Director of the GBS|CIDP Foundation! I look forward to guiding the organization to greater goals via our pillars of support, education, research and advocacy.

Through my title is new, I am not! My son, Stuart, had GBS at the age of five and a half years old. For 18 years, I was the person who headed the group of young children with GBS and became such an integral part of the organization through my contact with so many families. Stuart is now 19 years old and has become one of our best advocates!

GBS has become part of our family not only personally, but now professionally as well.

My tenure started off with a bang! Who would have ever thought that a mosquito causing the Zika virus would bring so much attention to Guillain-Barré Syndrome? We have been contacted by people worldwide wanting to know more. Our official press release appears on page 4. As we speak, members of our Medical Advisory Board are actually in South American countries coordinating research on this curious phenomenon. More information and how we helped secure treatment for these patients will appear in the next issue of the newsletter. In the meantime, check our website for daily updates on the Zika virus and GBS.

The office is abuzz with activity. Plans are being made for 100 chapter meetings this year, 20-25 Walk-and-Roll events, and, of course, our 14th International GBS|CIDP Symposium being held September 22-24, 2016, in San Antonio, Texas. What a start! I am so proud of the GBS|CIDP Foundation and what we do! Let me hear from you!

Delighted to be here,

Lisa Butler
Executive Director