I
understand Malcolm Gladwell
author of “Small
Change: Why the Revolution will not be tweeting" premise that with the
increase of social media we are no longer as effective in our ability to enact
social change through revolution and activism.
I just don’t
completely agree with him.
And I will tell you why.
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|
Joseph McNeil, Franklin McCain,
William Smith, and Clarence
Henderson
holding a sit-in at a Woolworth’s
lunch counter in Greensboro, North
Carolina, February 2, 1960. Credit: © UPI/Bettmann/Corbis
|
I do agree that social media has led us to a form of “lazy” activism.
The courage that it took for four young black men to sit at a designated
white’s only snack bar is amazing. Think about it, how afraid would you have
been in that time, a racial minority sitting in the wrong seats simply because
it was the right thing to do against a majority of opposite thinking people.
 |
|
"Tank Man" iconic image of democracy
temporarily
stops the advance of
a column of tanks on June 5, 1989, on Chang’in Avenue,
Beijing, was taken by Jeff
Widener of the
Associated
Press, from a sixth
floor balcony of
the Beijing
Hotel
|
Then there is the image of a Tiananmen
Square student, standing in front of a line of tanks (TANKS!) in 1989. His solitary hope in the face of all that mech
assault capability was that civility would triumph. It isn’t what he did. It is
what he had the courage to do for a peaceful resolution. His courage could not
be tweeted but, thanks to social media we could collectively bear witness to
his stand. That one lonely figure, bearing no arms.
History is
filled with physical demonstrations and controversy of opinion. Some, not all,
has brought about positive social change, whether it was driven by social or
political motivations.
The Boston
Tea Party, the right of women to vote, the equal rights movement for African-Americans,
the musical revolution of rock n’roll. Pick your cause, pick your fight.
So, if
current social media activism doesn’t have that element of physical death or
threat of potentially terminal harm, is it any less valuable? One word. No.
And I will
tell you why; the iCancer Campaign. I am a carcinoid NETS survivor. NETS stands
for neuroendocrine
cancer. The BIG, scary ‘C’.
What is it? Remember
Steve Jobs, the beloved inventor of the toys you love to worship under the white
Apple? Mac, iPod, iPhone, iPad. Steve Jobs was their founding father. He died
of NETs — cancers of glands in the body
that release hormones under the control of the nervous system. NETs is
difficult to treat because patients typically only present symptoms after the
cancer has reached a relatively late stage and started to spread to other parts
of the body. Steve Jobs had pancreatic NETs.
I had Carcinoid. That is your brief introduction and now I will explain further
how a group stood scientific fundraising on its ear by invoking the power of
social media “We”.
Enter
Swedish Professor Magnus Essand, Dr. Justyna Leja and their research group at
Uppsala University, Sweden. They re-engineered an adenovirus (often responsible
for a cold) into a weapon of mass destruction against NETs cancerous cells. The
adenovirus infection ruptures the tumor cells, the contents released from the
dead cells then stimulate the immune system to attach to other tumor cells and destroy
them too.
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| Professor Magnus Essand (r) and Dr. Justyn Leja (l) |
I hope you
are still with me. This is the edge of a cure for a terminal cancer.
The modified virus worked in mice
but laid dormant in a laboratory freezer because there were no funds to begin
the human clinical trials. Sweden supports basic research but falls short on
the more expensive clinical human studies. There were also patent problems,
Essand didn’t patent in his commitment to publishing in medical journals.
Essand and Leja were approximately 3 million euro short to begin initial
clinical studies in humans.
That is what is happening on your
left hand.
On your right hand are two friends,
Alexander Masters and Dido Davies in the United Kingdom. Alexander is an author, screenwriter and
illustrator. Dido is a biographer, co-writer and best friend to Alexander. Dido
informs her friend Alexander that she has been diagnosed with pancreatic NETs.
The exact same cancer that killed Steve Jobs. Alexander and Dido do exactly
what you might do and what I did do...they googled. Alexander finds Professor
Magnus Essand and is surprised what the Professor has stashed in his freezer
and mind boggled that problems over patenting and funding had a possible cure
for a terminal cancer stalled. Alexander was particularly stymied that the
required funding didn’t seem so impossible an amount when weighed against human
lives.
Left hand Prof. Essand and Dr. Leja,
right hand Alexander Masters and his best friend Dido Davies.
+
Right Hand
Left hand
meets right hand: Alexander met with Essand and Leja in Sweden. Upon his return
to England he did what he does best, he wrote an article in The Daily Telegraph about it all and his
personal outrage that the research was stalled by a lack of funds. His article caught the attention of a
clinical oncologist and bio therapist by the name of Richard Melcher who
partnered up with Professor Kevin Harrington, a consultant oncologist. Together they contacted Prof. Essand and
reviewed his work, lending their professional opinion that Essand and Leja had
something rather exciting in those petri-dishes in the freezer.
Enter Dominic Nutt, a fellow British
journalist who has NETs and Liz Scarff, a social media expert who donated her
time to co-ordinate the campaign plus crowdfund experts Indiegogo and a website
was born called iCancer Campaign. A snowball effect of people who felt that
science could and should be helped. The word got out and the campaign
mushroomed taking on other people willing to help, including yet another NET
patient, Catherine Cooling Davis, who helped spread awareness and raise funds
in the United States. Just people, funding science advancement by sheer choice
and generosity.
The rallying cry of iCancer is "People before profit. Let's crowdfund the anti-cancer virus that could save thousands".
At the end of the Indiegogo campaign
period of February 14, 2013 iCancer had raised $161,942 through the Indiegogo’s
site and another $190,000 donated directly to Uppsala University. My last
notification from The Carcinoid Cancer Foundation was on June 19, 2013 and it
included the information that the Tethys Oil AB Board Chairman and founder,
Vincent Hamilton had donated approximately $2 million to the campaign.
Phase 1 clinical studies can now
begin. All hope is that it is the beginning of a cure. The next projects the iCancer
Campaign is considering to help fund are clinical studies for lung cancer and
brain tumors in children, both forms of neuroendocrine cancer.
All because one man had a friend diagnosed
with NETs and was dissatisfied with the bureaucracy of drug patenting and
testing and decided that he, with the help of we, was going to do something
about that. Armchair activism that could save my life, or yours, or the life of
someone we hold dear.
I hope you have the opportunity to
check out the resources below for further reading on the remarkable iCancer
Campaign.
Dido Davies passed away June 15,
2013 from NETs. Dr. Justyna Leja is now
Professor Justyna Leja
Resources & Further Reading
”iCancer Campaign” website, http://icancer.org.uk/
A Possible Cure for Neuroendocrine
Cancer: Exciting Update! (June 19, 2013) The
Carcinoid Cancer Foundation. Retrieved from
http://carcinoid.wordpress.com/2013/06/19/a-possible-cure-for-neuroendocrine-cancer-exciting-update/
Cooling Davis, C. (June 25, 2013),
Let’s Cure Neuroendocrine Cancer. Retrieved from http://netcure.weebly.com/
Master, Alexander (undated). An
iCure? Crowdfunding might catapult promising cancer treatments into clinical
trials, but can it make a real difference? Aeon.
Retrieved from http://www.aeonmagazine.com/living-together/alexander-masters-crowdfunding-cancer-treatments/
Nutt, D. (September 14, 2012). Would
I take an untested cancer treatment myself? Hell, yes! The Telegraph. Retrieved from http://www.telegraph.co.uk/health/9544400/Would-I-takean-untested-cancer-treatment-myself-Hellyes.html
Photo Credits
Picture of the Birmingham Four
courtesy of http://www.britannica.com/blogs/2013/02/blac-history-spotlight-civil-rights-movement/
Picture of Tiananmen Square courtesy
of Wikipedia https://en.wikipedia.org/wiki/Tiananmen_Square_protests_of_1989 Photographer Jeff Widener. (The Associated Press) June 5, 1989.
Picture
of Professor Magnus Essand and Dr. Justyna Leja
courtesy of iCancer Campaign, http://icancer.org.uk/
