Fall 2016

GBS|CIDP Foundation’s Perfect 100 Score!

GBS|CIDP Foundation International announced it has earned a flawless score of 100 from Charity Navigator for Financial Health, and Accountability and Transparency. Charities with these distinctions execute their missions in a fiscally responsible way while adhering to good governance and other best practices that minimize the chance of unethical activities.

Foundation CFO, Camille Yee
Foundation CFO, Camille Yee

These two 100 ratings translate to a perfect record which is earned by less than 1% of the thousands of charities evaluated by Charity Navigator. Since the award was given, the Foundation has received several significant gifts.

In talking with these most generous supporters, we learned that the Charity Navigator designation was an important factor in their decision as to which of the thousands of charities available to them to support. Camille Yee, Foundation CFO for more than 24 years, stated, “this designation is an encouragement to me as I strive to be the best steward of Foundation funds as possible. The mission to support patients is our foremost responsibility. Without sound fiscal management the GBS|CIDP Foundation International would be unable to do so.”

 
Here’s are a few examples:
Anne Laver, Aiken, SC, wrote: “Here is a photo of the group at Wellington, celebrating Big Red’s win. A great celebration
for an outstanding nonprofit. It was Boyd, along with these folks, who chose GBS|CIDP Foundation International as the recipient of the $10,000.” Regards, Anne!

 

gbs-nl-0916_web-version-final

 

Pat Reese, wife of Dale Reese Foundation founder, Dale Reese, Blue Ball, PA, called to say, “I choose ten charities a year to disperse funds in honor of my husband, Dale. When searching which local charities to support, I choose only those with outstanding ratings on Charity Navigator. Congratulations, on your well-deserved award.”

Ronald and Christine Sobchick, Fullerton, CA, recently donated $10,000. The Sobchik’s daughter, Laura, was diagnosed 36 years ago with GBS. They wrote, “GBS|CIDP Foundation International has done amazing research. We would like to continue this mission. Laura recently married and we have given this gift in honor of her.” Ron and Christine, we are honored to share in this joyous occasion with you and your family. Thank you for your gift.

For more information about our score on Charity Navigator, visit
charitynavigator.org/index.cfm?bay=search.summary&orgid=10284

November is National Family Caregivers Month

Take Care to Give Care!

The first rule of taking care of others: take care of yourself first!

Caregiving can be a rewarding experience, but it is also physically and emotionally demanding. The stress of dealing with caregiving responsibilities leads to a higher risk of health issues among the nation’s 90 million family caregivers. So as a family caregiver, remember to pay
attention to your own physical and mental wellness, and get proper rest and nutrition. Only by taking care of yourself can you be strong enough to take care of your loved one. You really do need to “take care to give care!”
• Caregiving can be a stressful job. Most family caregivers say they feel stressed providing care for a loved one. With all of their caregiving responsibilities—from managing medications to arranging doctor appointments to planning meals—caregivers too often put themselves last.
• The stress of caregiving impacts your own health. One out of five caregivers admit they have sacrificed their own physical health while caring for a loved one. Due to stress, family caregivers have a disproportionate number of health and emotional problems. They are twice as likely
to suffer depression and are at increased risk for many other chronic conditions.
• Proper nutrition helps promote good health. Ensuring that you are getting proper nutrition is key to helping maintain your strength, energy, and stamina, as well as strengthening your immune system. Maintaining a healthy diet is one of the most powerful things you can do to take
care of yourself and keep a positive attitude overall.
• Ensuring good nutrition for your loved one helps make care easier. As many as half of all older adults are at risk for malnutrition. Good nutrition can help maintain muscle health, support recovery, and reduce risk for re-hospitalization—which may help make your care of a loved one easier.
• Remember: “Rest. Recharge. Respite.” People think of respite as a luxury, but considering caregivers’ higher risk for health issues from chronic stress, those risks can be a lot costlier than some time away to recharge. The chance to take a breather—the opportunity to re-energize—is vital in order for you to be as good a caregiver tomorrow as you were today.

During National Family Caregivers Month, we remind family caregivers that to be strong enough to care for your loved one, you must Take Care to Give Care!
For more information, visit caregiveraction.org

GBS|CIDP Board Member, Matthew LaRocco, instrumental in the Department of Defense Peer-Review Medical Research Program adding Guillain-Barré syndrome to the list of Eligible Conditions

Voted on to the GBS|CIDP Foundation International Board of Directors as advocate liaison in June, 2016, Matthew LaRocco, played a big role advocating for the DOD to make this decision.

We are grateful for his work to influence the US Senate to name Guillain-Barré syndrome as an eligible condition on the Department of Defense peer-review medical research panel. The addition allows researchers access to the more than three billion dollars set aside for the program. The Peer Reviewed Medical Research Program, established in 1999, has supported research across the full range of science and medicine, with an underlying goal of enhancing the health and well-being of military service members, veterans, retirees, and their family members.

Matthew, who reached out to us in 2011 after a severe bout with Guillain-Barré syndrome,
immediately rallied to become a liaison and also Chair of our Advocacy Committee! In his brief time with us, the Foundation has already benefited from Matt’s 20-year career in government and public affairs, representing Fortune 500 and international companies on complex issues before the US Congress, executive branch and other key decision makers on behalf of his clients.
Matthew is founder of the public affairs firm Washington, DC-based, Columbia Strategic Counsel.

Thank you, Matt!

Since the outbreak of the Zika virus in South America last year…

By Global Medical Advisory Board Chairman Dr. Ken Gorson

There has been an enormous amount of information about the neurological complications associated with Zika infection which has been disseminated to the public by media outlets, research publications, recommendations from the Centers for Disease Control (CDC) and National Institutes of Health (NIH,) web postings and press releases from various organizations, including the GBS|CIDP Foundation International. We would like to place this information in proper context and clarify the current understanding of the relationship between Zika virus and GBS.
The Zika virus was first discovered in a Rhesus monkey in Uganda in 1947. The first human infection was reported in 1954 in Nigeria, and during the subsequent 60 years there have been only a handful of human cases reported; there was little attention paid to the virus because human infection was so rare and symptoms were mild and resolved without complications. During this time, the virus spread eastward to other countries in Africa and Southeast Asia, with the first major outbreak in 2007 in the Yap State of the Federated States of Micronesia (an island in the South Pacific.) There were approximately 900 cases reported, but only 19% had clinical symptoms of the infection (discussed below.) There were no neurological complications reported.

The next Zika outbreak occurred in French Polynesia in 2013, followed by smaller outbreaks in other South Pacific islands. It was during the French Polynesia outbreak that a relationship between Zika infection and GBS was first reported. In 2015, the Zika virus was detected in Brazil,
and since then the virus has spread rapidly through South and Central America, Mexico, and many islands of the Caribbean, reaching epidemic proportions, most recently in Puerto Rico. The virus has spread north to the continental United States, and as of August, 2016, there have been 29 mosquito-transmitted infections, thus far limited to the state of Florida.
Zika virus is transmitted most commonly by the bite of the Aedes Aegypti mosquito. This mosquito is very common throughout South and Central America, the Caribbean, and the lower half of the continental United States, and explains the spread of the virus north from the southern hemisphere. Currently, 70 countries have reported Zika virus infection. This mosquito primarily feeds on humans, bites during the day and night, may bite multiple people during a single meal, where the bite is often imperceptible. The mosquito reproduces in free standing
water, and may lay eggs in as little as a bottle cap of water. This, in part, explains the rapid rise in Zika infection in countries of South and Central America, where free standing water is common, combined with densely populated areas without access to screens and air conditioning (which reduce mosquito transmission.) Once an infected mosquito transmits the virus to a person, a subsequent bite of that person from another, non-infected mosquito, can infect that mosquito, which then spreads the virus with further mosquito bites to other people. This explains how people within the same family or neighborhood can become infected quickly.

Lastly, there are many “travel-related” cases. These are individuals who have traveled to regions where the virus is common (so called endemic areas,) who became infected, returned to the United States, and then developed symptoms of the infection (where non-infected mosquitoes also may bite them and spread the virus.) As of this report, there have been 2,487 travel-related cases in the United States, and 8,968 in US territories (mostly in Puerto Rico.) The virus also may be spread from a pregnant woman to the fetus and by sexual transmission, and there have
been single reports of the virus spread through platelet transfusion. During the French Polynesia epidemic, 3% of donated blood screened positive for the virus, and all US blood banks are required to screen for the virus. The symptoms of Zika virus infection can be similar to other viral infections like the flu. Symptoms are acute in onset but generally mild, and include fever, joint and muscle aches and pains, rash, malaise (an ill feeling,) headache, and conjunctivitis (pinkeye.) The symptoms resolve uneventfully, usually within a few days to a week. The diagnosis is established by blood testing that detects viral RNA or acute antibodies directed against the virus. There is no specific anti-viral treatment. Symptoms are usually managed with rest, increased fluid intake, and acetaminophen or other over the counter analgesics to treat fever and pain. Only 20% of infected individuals have symptoms of acute viral infection. The remainder do not know they have been infected, which has particular importance to women who
are pregnant or actively planning to become pregnant, as they can unknowingly spread the virus to their unborn child. It is the potential catastrophic neurological complications that follow Zika infection that have made international headlines. It is now well-established that the virus has

a particular attraction to nerve cells in the brain of the developing fetus and to peripheral nerves in adults; it is therefore considered a “neurotropic” virus. There are severe neurological complications that can occur to the developing fetus following exposure to the virus. As of August, 2016, an increased incidence of GBS or laboratory confirmation of GBS following Zika infection has been reported in 16 countries. There have been only 7 cases of GBS in the continental US, and 26 cases in US territories. What does this mean for you? First, although the risk of developing GBS after Zika infection is higher than the background rate in the general population, the risk is still very low: approximately 1 in 4000 (at least in the French Polynesian population,) and perhaps even lower if the rate is closer to what has been reported in Brazil and Columbia. Second, GBS has not been linked to asymptomatic Zika virus infection, which represents 80% of all infections. Third, in contrast to densely populated regions in South and Central America, public health experts believe the risk of Zika infection reaching epidemic proportions in the continental United States is low, as it is more likely that there will be
small, isolated outbreaks, and thus the chance of developing GBS is even further reduced. Fourth, there have been no reports of Zika-related GBS in patients who have had GBS in the past (or CIDP and other immune neuropathies,) or Zika infection worsening residual neuropathic symptoms in patients who have had GBS. Finally, there currently are no published data regarding treatment response or prognosis in patients with Zika-related GBS, but there is no reason to believe that response to therapy and recovery should be substantially different from non-Zika related cases.

There are several measures that reduce the risk of Zika infection by mosquito transmission. The CDC has recommended routine application of mosquito repellant (containing DEET or other effective agents,) wearing long-sleeve shirts and pants, removing items around the home that may hold water and serve as a breeding ground for mosquitoes, using screens on windows and doors, and air conditioning when available. Pregnant women, or those planning to become pregnant, should follow recommendations from the CDC website to further reduce
their risk of exposure.
Vaccine development against the Zika virus is underway and looks promising, but due to lack of funding from Congress, this critical research may be delayed or even halted. In addition, despite specific recommendations from the World Health Organization, there are no formal surveillance and monitoring systems in place to ascertain the nature and frequency of Zika-related GBS in the United States. We strongly suggest that you contact your congressmen to encourage him or her to urgently allocate appropriate funding for these activities.

For additional information, please contact Lisa Butler,
Executive Director, 610-667-0131, lisa.butler@gbs-cidp.org

From the Executive Director

Dear Friends,
As concern about the Zika virus and its link to Guillain-Barré syndrome mounts,
GBS|CIDP Foundation International has been contacted by the White House and some
of the most prominent news media nationwide—all searching for answers that few of
us have.
What that tells us is that our reputation, as “THE” go-to organization for Guillain-Barré
syndrome, CIDP and variants exceeds expectation. What a pleasure it is to know that
we’ve earned the respect of patients, caregivers, families, and the medical community
to become a trusted source for research, information, love and care.
In this issue of The Communicator, you will find an update about
Zika, and several patient stories that will inspire you regardless of
where you are on your journey.
As the holiday season approaches, I encourage you to stay positive
and, difficult as it may seem, to be thankful for the opportunity to walk
this journey. Please know that we are here to support you in whatever
way possible… you are not alone!
My Best,
Lisa Butler

Executive Director