Inside Salk: Salk Institute Launches Website for Polio Survivors

Inside Salk has launched PolioToday.orga resource for polio survivors intended to raise awareness of the crippling post-polio syndrome (PPS), a serious neuromuscular condition that can strike an estimated 40-50 percent of people decades after they were first infected with poliovirus.

The World Health Organization estimates there are about 10-20 million polio survivors worldwide. Characterized by extreme fatigue and renewed weakness or paralysis in the limbs, PPS is often misdiagnosed because its symptoms resemble other crippling neurodegenerative diseases. The severity of paralysis during the original polio infection (decades earlier) does not seem to play in role in whether or when PPS strikes, and the syndrome is typically gradual in onset.

“I have had patients who had very mild cases of polio, or don’t even remember having had polio when they were young, end up with post-polio syndrome,” says Dr. Jacquelin Perry, renowned orthopedic surgeon and world authority on gait analysis who treats PPS patients at Rancho Los Amigos National Rehabilitation Center in Downey, California.

PPS mimics other debilitating diseases, and because there is no single diagnostic test to confirm it, it is considered a disease of exclusion – meaning it requires specialized testing by well-trained physicians who rule out all other possibilities to achieve a proper diagnosis. That diagnostic complexity and confusion, coupled with the fact that the U.S. polio survivor population is now elderly (or close to it), has relegated the PPS community to relative obscurity.

“People suffering from PPS seem to exist in the shadows, far from broad public awareness of the disease and its terrible manifestations,” says Susan Trebach, Salk Institute Senior Communications Director. “Our goals are to heighten awareness and understanding of PPS, encourage people to seek proper diagnosis and treatment, and facilitate the growth of online communities of polio survivors around the world.”

PolioToday.org features video testimonials from polio survivors who share recollections of their personal battles with polio when they were young, their more recent diagnosis and management of PPS, and how they are coping with their condition. There is an expert opinion video page featuring several clips by UCLA Neurologist Dr. Susan Perlman, a PPS specialist who explains the cause of PPS and provides relevant information.

“Polio survivors have searched for a way to actively connect to one another for years,” says polio survivor Gladys Swensrud from San Diego, California. “This exciting Salk Institute site, PolioToday.org, offers not only a forum for the distribution of important polio and post-polio related information, but it also creates a much needed link for polio survivors worldwide to connect with one another using modern social networking capabilities.”

Rick Van Der Linden, a polio survivor from Hemet, California adds: “The best part of the site is that it’s been developed just for us. It allows us to communicate with and learn from one another. It’s the best thing going on the Web for the polio survivor community.”

Since going live in August, with no mainstream public announcement of any kind, the Community section of the site is already attracting attention as polio survivors, some from as far away as Australia, have signed up to participate in various discussions that have been posted. Under the Emotional Stress and PPS discussion topic, for example, members describe the ways they control the anxiety and depression associated with PPS.

“It is amazing to see people openly discuss their deepest health concerns related to PPS as well as how they found us in the first place,” says Mauricio Minotta, the Salk Communications Director leading the website project.

“It is especially gratifying to receive comments, either on Twitter or YouTube, from people who tell us how much they appreciate this new internet resource,” Minotta says.

The Resources page provides users with a growing list of polio survivor groups around the country and PPS and polio-related literature from other organizations such as Post-Polio Health International, the World Health Organization and Rotary International Polio Eradication.

Find the original publication at Salk.edu.

Gates Foundation: Polio Outbreaks, What You Need to Know

September 10, 2015

Over the last few years, gaps in vaccination coverage like this have persisted in places like Ukraine and Mali – along with neighboring Guinea, where the cVDPV strain seen in Mali is believed to have originated. In 2014, only half of children in Ukraine were fully immunized against polio and other vaccine-preventable diseases. This number has dropped further this year, with only 14% of one-year-olds having received the polio vaccine. Similarly, Guinea’s polio vaccination coverage fell from 63% to 42% in 2014, due partly to the Ebola outbreak. While Mali has maintained relatively high vaccination coverage, gaps remain in some areas of the country.

An outbreak response is underway in coordination with the governments in all three of the affected countries (Ukraine, Mali and Guinea), which will include at least three large-scale immunization campaigns to reach all children under the age of five with vaccine. Campaigns like these have been able to effectively stamp out outbreaks of both cVDPV and wild poliovirus (WPV) in recent years, and the program has the knowledge and the expertise to respond quickly. These recent cases serve as a reminder that in order to stop all polioviruses, it’s critical that countries maintain strong disease surveillance and ensure all children are vaccinated. And most importantly they’re a reminder that until we eradicate polio once and for all there is always a threat that it can come back. We’re closer than we’ve ever been to eradication, but the polio program requires the support of governments at all levels, the international community and partners to ensure the job is finished.

Responding to an outbreak isn’t easy, but the polio program has a system in partnership with country governments to ensure that when there is an outbreak they are stopped quickly.

Find the original publication at ImpatientOptimists.org.

Stopping Vaccine-Derived Poliovirus Outbreaks

Any polio outbreak begins in the same way: a child complaining of a headache and a fever. Within just a few hours, the virus causes rapid onset, floppy, paralysis, for which there is no cure. Whether caused by one of the three strains of wild poliovirus (WPV) or by circulating vaccine derived poliovirus (cVDPV), the result of is the same: a lifetime of paralysis that could have been prevented with a simple vaccine.

The Global Polio Eradication Initiative (GPEI) works to stop all types of the virus permanently, to provide a polio-free world for future generations. In 2014 and 2015, cases of paralysis caused by cVDPVs have been reported in Madagascar, Mali, Nigeria, Pakistan, South Sudan and Ukraine. The GPEI responds to children paralysed by cVDPVs just as they would to an outbreak of WPV- with technical support to the country, strengthened and expanded surveillance, community engagement and a rapid, large scale immunization response.

Preventing outbreaks of cVDPV

A cVDPV is an extremely rare strain of polio genetically changed from its original, weakened strain contained in oral polio vaccine (OPV).  Excreted vaccine-viruses can find susceptible children and begin to circulate beyond the immediate household into the broader community, which in the vast majority of cases is a positive thing, spreading the protection of the vaccine further. However, the longer it is allowed to survive this way in areas where not all children are receiving the vaccines, the more genetic changes it undergoes as it replicates, and eventually it can revert to the point that it can cause paralysis. Circulating VDPVs are viruses that have gone through this process. Therefore cVDPVs are the consequence of failure to vaccinate children, rather than of the vaccine itself.

Circulating VDPV events are extremely rare. Over the past 10 years, more than 10 billion doses of OPV have been administered to more than 2.5 billion children, preventing more than 650,000 polio cases every single year. In that same period, only 21 cVDPV episodes are known to have occurred, resulting in 622 cases. But a child paralysed by any polio virus is irrevocably affected for life, and so once wild polioviruses have been successfully eradicated, OPV must be phased out, as the public health benefits of OPV will no longer outweigh the very small risk of its continued use.

Find the original publication at PolioEradication.org.

BeyondPolio and InnoCentive Announce Winners of First Innovation Challenge

Crowdsourced Ideas from Five Solvers Identify Approaches to Making Delivery of Noninfectious Polio Vaccine Easier and More Affordable 

WALTHAM, Mass., Nov. 13, 2012 /PRNewswire/ – InnoCentive, Inc., the global leader in open innovation, crowdsourcing, and prize competitions, and BeyondPolio, an initiative of the Jonas Salk Legacy Foundation and the investment firm Spencer Trask, today announced the solutions of its first Innovation Challenge which sought to identify ways to reduce the cost and facilitate the use of the inactivated poliovirus vaccine (IPV) in low- and middle-income countries. This Challenge achieved BeyondPolio’s desired result of identifying promising solution paths that could help complete the eradication of polio at a global level, building on the success of the Global Polio Eradication Initiative which has used oral poliovirus vaccine (OPV) to nearly wipe out the virus in the remaining countries where it has been circulating.

“One of the problems we face is that OPV continues to reintroduce potentially paralyzing polioviruses in areas where it is used, since the vaccine contains weakened viruses that can mutate back to a virulent form,” said Dr. Peter Salk, President of the Jonas Salk Legacy Foundation. “IPV, which is used in over 50 wealthier countries, does not have that problem, but it is currently unaffordable for widespread use in low- and middle-income countries.  Reducing its cost and making it easier to apply will go a long way toward helping push poliovirus infection to extinction.”

This successful Ideation Challenge asked participants to identify promising approaches to significantly reducing the cost of using IPV in countries where it is currently unaffordable. Over a two-month period, the Challenge attracted 432 Solvers and more than 50 solutions were submitted. Entries were reviewed by experts in the field of polio research and eradication, and by Dr. Peter Salk, son of Dr. Jonas Salk, the researcher who led the team that developed IPV in the early 1950s.

Kevin Kimberlin, Chairman of Spencer Trask, added “We are delighted at the level of interest our initial Challenge elicited and the creative ideas proposed.  InnoCentive’s diverse Solver network has helped focus attention on several promising approaches to reducing the cost of IPV and developing affordable new noninfectious polio vaccines.”

The following Solvers or Solver teams were selected as winners and each received a $5,000 award. Two of the Solvers, Stephen Duren and Tiong Sun Chia, learned of the Challenge through the Open Innovation Pavilion on nature.com, which is powered by InnoCentive.

  • Micron Biomedical, LLC, Marietta, Georgia – Dissolving Microneedle Patches
  • Harvey Arbesman, M.D., Clinical Assistant Professor, Department of Dermatology, School of Medicine and Biomedical Sciences, University of Buffalo – Transcutaneous Adjuvant Patches
  • Stephen Duren, graduate student, Department of Cell Biology, Microbiology and Molecular Biology, University of South Florida – Production of Poliovirus Antigens in Yeast
  • Tiong Sun Chia, Ph.D. candidate, University of Western Australia at Perth – Production of Poliovirus Antigens in Plants
  • Dmitriy S. Tipikin, Ph.D., Research Associate, Department of Radiology, Geisel School of Medicine at Dartmouth – Improvements to Traditional Poliovirus Vaccine Production Methods

Following the success of this initial Challenge, BeyondPolio is investigating ways to accelerate development and testing of the proposed ideas.  BeyondPolio plans to conduct future Challenges and promote collaborative programs, and is actively seeking partnerships with corporations, foundations and others who can bring support, resources, and attention to enhance these efforts.

“InnoCentive is proud to be a part of this Challenge and its solutions, which hold the promise of helping to eradicate polioviruses from the globe forever,” said Dwayne Spradlin, CEO of InnoCentive. “Crowdsourcing ideas from across geographies, disciplines, and specialties has proven time and again to be a rapid and highly effective means of advancing innovative research into global health issues.”

About BeyondPolio
BeyondPolio is dedicated to assisting the global effort to eradicate polio and maintain success once eradication is achieved.  Our goal is to increase the affordability and utilization of inactivated poliovirus vaccine (IPV) in the final phases of the eradication effort and aid in the development of other safe and affordable noninfectious poliovirus vaccines.  We use collaborative innovation programs and Challenges to focus attention, attract new people and spur new creative approaches to this mission.

BeyondPolio is a collaborative program and designated fund of the Jonas Salk Legacy Foundation, undertaken in conjunction with Spencer Trask & Co. The Jonas Salk Legacy Foundation is a charitable organization under Section 501(c)(3) of the Internal Revenue Code, and donations to support this program are deductible as charitable contributions to the extent permitted by law.

About InnoCentive
InnoCentive is the global leader in crowdsourcing innovation problems to the world’s smartest people who compete to provide ideas and solutions to important business, social, policy, scientific, and technical challenges. Our global network of millions of problem solvers, proven challenge methodology, and cloud-based technology combine to help our clients transform their economics of innovation through rapid solution delivery and the development of sustainable open innovation programs. For more than a decade, leading commercial, government, and nonprofit organizations such as AARP Foundation, Booz Allen Hamilton, Cleveland Clinic, Eli Lilly & Company, EMC Corporation, NASA, Nature Publishing Group, Procter & Gamble, Syngenta, The Economist, and The Rockefeller Foundation have partnered with InnoCentive to rapidly generate innovative new ideas and solve problems faster, more cost effectively, and with less risk than ever before.

For more information, visit www.innocentive.com, email [email protected], or call 1-855-CROWDNOW (U.S.) or +44 (0) 207 935 0827 (International).

Or contact Spencer Trask directly at [email protected].