Turn Shit into Sugar – Opportunism

Every negative situation contains the possibility for something positive, an opportunity. It is how you look at it that matters. Your lack of resources can be an advantage, forcing you to be more inventive with the little that you have. Losing a battle can allow you to frame yourself as the sympathetic underdog. Do not let fears make you wait for a better moment or become conservative. If there are circumstances you cannot control, make the best of them. It is the ultimate alchemy to transform all such negatives into advantages and power. Robert Greene and 50 Cent, The 50th Law


When my friend Nadia Bodkin was diagnosed with Ehlers Danlos Syndrome (EDS) in 2010, she was faced with a decision. With her diagnosis, she finally found out the cause of her chronic, debilitating pain. Pain so intense she would faint and black out when doing everyday tasks like going to the grocery store. 

There's much misunderstanding and misinformation about Ehlers Danlos Syndrome both in the media and in the medical community. But, essentially, it is a genetic disease which makes it very hard to make collagen, the protein that adds structure and stability to our body - basically, the glue that holds it all together.  

In Nadia's case, because her body could not produce collagen effectively, her opioid receptors were loose and flaccid, and painkillers could not bind effectively to those receptors, meaning that painkillers - even OxyContin, Dilaudid or Percocet - gave her zero relief from her pain. 

Furthermore, since there is still no effective treatment for EDS, she was faced with a life of intense physical pain, combined with mobility issues that cause even walking around the house to be extremely painful and difficult. Not to mention the drastically reduced life expectancy of 30-40 years old.

So she was faced with a decision - or as she describes it, a "crossroads." She could either wallow in pain and misery, and become depressed like many EDS patients understandably do. Or, she could do life as best as she could and force herself to see the positive in her situation.

Nadia decided to stay positive. She saw this as an opportunity to turn shit into sugar and to make a difference in the lives of the millions of people around the world who suffer from this poorly understood disease.

In her dorm room at Rutgers University, she started what would become the EDSers United Foundation. She reached out to medical researchers and geneticists, pioneers who developed the technology to take DNA samples from an unborn baby and could tell with startling accuracy how long that baby would live, what diseases they will likely struggle with, and even scarier, what they would most likely eventually die from.

These are the same researchers who are developing treatments that may hold the key to tissue regeneration and telomere extension - the fabled "fountain of youth." Imagine being 77, and having the mind and body of a 27-year-old.

Skeptical? I was too. Until a close pharmacist colleague referred me to this page on Stanford Medicine's website.

Nadia chose to fight past the skepticism and started advocating for her cause, convincing investors on the boards of pharmaceutical and biotech companies to invest $15 million over the next 3 years.

Which brings us to NOW. We are faced with a hard deadline. These investors want to know that there is money to be made - they want a return on their multi-million-dollar investment. They want proof - hard, physical evidence - that there is enough demand and public interest to justify this investment to the board members at the pharma companies which they lead.

What is the evidence that they demand? They want to see signatures of support - not from just any old Plain Jane or John Doe (that's too easy). They want to see true supporters, who are willing to pull out their credit cards and checkbooks, and actually pledge money (not so much that the average person can't afford it, but enough to show that they actually do care about the cause) - $10. 

They want 1000 signatures with accompanying $10 donation in two weeks time - deadline: April 1st, 2016. Or, they will take the $15 million we need off the table.

As I'm typing this, we have 74 physical signatures and 183 digital ones. We need 743 signatures over the next 7 days. 

Please help us with our cause. Click here to donate, and please tell everyone you know.

Thank you,