Sweaters for Penguins Prove the Power of Internet
What do sweaters for penguins and medicine for a little boy have in common? The power of the internet.
Early last week, I received a note from a local family asking for prayers and support for a little boy named Josh Hardy.
Josh is a seven year old from Fredericksburg, Virginia who is battling a virus he got because his immune system was suppressed during a bone marrow transplant needed to fight off cancer.
The medicine that he needed and which was prescribed by his physicians at St. Jude's hospital in Memphis is in development at a pharmaceutical company called Chimerix. Pharmaceutical companies can distribute medications that are still in clinical trials prior to official approval by the Food and Drug Administration through a program called "compassionate use."
Despite that, the company and the CEO refused to make the medicine available to Josh citing cost, concern that research might be compromised and hesitancy to open the floodgates of demand for the product.
The CEO, reportedly a parent himself, said that he was anguished by the decision but that even a visit to Josh's bedside in critical care wouldn't change his mind.
A group called Josh's Army began soliciting support, asking people to follow #SAVEJOSH on Facebook, Twitter and other social media. People were urged to contact the CEO and Board of Directors in an attempt to sway the company's decision.
I met Matt and Dana Hardy, Josh's uncle and aunt, when our boys played middle school football together. Matt is a Bellefonte native. Like his three siblings and their spouses, Matt put the call out to his friends on Facebook to like the #SAVEJOSH page.
Dana set up a Twitter account and in less than a week had over 2,700 retweets. The #SAVEJOSH Facebook page jumped to more than 20,000 likes and over a million views. The community of Fredericksburg joined in -- signs on the marquees at local schools asked for thoughts and prayers for Josh.
The sixth grade teacher who teaches Josh's older brother made it a lesson on the positive use of social media and had her students analyzing the impact of spreading the word. The story was quickly picked up by not only the Fredericksburg news outlets by also by CNN, Fox News and other national media. Individuals and companies stepped forward to offer the money which Chimerix initially threw out as the hurdle to providing the medicine to Josh. Soon, a caravan was organized to drive to Chimerix headquarters in North Carolina where a peaceful protest was planned.
For three days I watched the story and read the internet updates. I rushed to the TV to see Josh's mother Aimee appeal to Chimerix on the national news. On Tuesday night of last week, the company reversed its stance and indicated the medication would be made available to Josh and other patients who had been denied access. I had already seen the news on a post from a friend from high school who lives in Virginia.
If we only we could somehow bottle the power of the internet.
It's sometimes called the contagion effect. Through our communication networks, we share information and have the ability to change behaviors, attitudes and perceptions based on that information. Like a bad cold, we share our experiences and our information through verbal, written or technological channels and it spreads.
Ask my Facebook friends who knitted sweaters for penguins.
Several friends shared a story last week about an oil spill near New Zealand that was harming animals and reportedly causing great discomfort to penguins. The accompanying picture was of an adorable little penguin in his hand-knitted "jumper" with holes for the wings.
There were accompanying directions for how to knit the little sweaters and the address of where to send the completed turtlenecks. At last report, thousands of the little sweaters have arrived at The Phillips Island Penguin Foundation.
The only problem is that the oil spill happened in 2000 near Australia (very different than New Zealand) and rescuers never really used knitted sweaters to warm the little birds although occasionally other rescue efforts have used something similar to prevent rehabbed birds from preening themselves and ingesting either soap or oil after they had been cleaned. (Sweaters on a bird might also be stressful in and of themselves).
The Penguin Foundation has reportedly taken to selling the sweaters in their gift shop and is trying to get the word out that donations of cash would be better for the penguins than a Penn State blue and white sweater.
It was a classic example of the power of the internet, misinformation and the impact of the urban myth. A rumor from New Zealand from 2000 finally arrives in State College in 2014 and people break out their yarn and needles to make sweaters for birds.
Thankfully, I don't know how to knit.
If we have learned anything since the development of the personal computer and access to the internet, we have learned that it is important to check our sources and sites like snopes.com to see if what we are reading about is actually true. In the case of little Josh Hardy, who has fought cancer four times in his short life, it can be amazing.
In the scams, scandals, crimes and misuse of the internet, that power can be humorous, inaccurate and, unfortunately, at times, dangerous.
The Hardy family is continuing to ask for prayers for Josh as his body works with the medicine to fight off the virus. The picture of Aimee Hardy, posted on the internet, holding the plastic bag with the just-delivered medicine brought tears to my eyes and exemplified, not only the power of social media but how far a parent will go to help his or her child.
According to Matt, as I write this, Josh is still hanging in there and giving it his best fight. Aimee and Todd Hardy and their network are now able to focus on Josh and his siblings instead of the campaign to get the medication. They are fighting an uphill battle but are appreciative of all of the thoughts and energy that continue to come in their direction.
As for the penguins? No sweaters needed.