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BioMarin CEO calls terminal cancer patient a “spoiled petulant brat”

BioMarin pharmaceutical continues to astonish, not by their move to refuse a dying cancer patient life-saving treatment, despite the FDA’s direct approval to do so, but by their CEO writing aggressive emails laced with insults and condescension. Not advisable to any company, whether in a moment of crisis or not.

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Jean-Jacques Bienaimé, Chief Executive Officer, BioMarin Pharmaceutical

Great occasions do not make heroes or cowards; they simply unveil them to the eyes. Silently and imperceptibly, as we wake or sleep, we grow strong or we grow weak, and at last some crisis shows us what we have become. – Brooke Foss Westcott, British Theologian, 1825-1901

BioMarin Pharmaceutical continues on the war path

Two weeks ago, I forewarned that BioMarin Pharmaceutical was headed toward a crisis and last week we discussed the accidental “reply-all” email the CEO sent out revealing the company’s crisis strategy.  I could never have predicted this week’s developments.

I have witnessed and studied crises of one sort or another over the last two decades and I have difficulty recalling too many examples of companies handling issues they face as poorly as BioMarin has.

Oh, we had Kenneth Cole tweet a few months ago that the uprisings in Egypt were caused by his Spring collection; and Abercrombie & Fitch has endured several years of criticism after their CEO said that the company only markets to good looking people.  But even in tasteless fashion empires, we do not frequently see CEOs go on email rampages in response to public outcry about their company’s behavior.

Supporters of Andrea Sloan have forwarded emails I will share below, and in conversation with Andrea, she discussed with me her feeling of having been mislead by the company’s Chief Medical Officer, who is no longer a licensed doctor.

To catch you up if you have not read previous articles on the situation, Andrea Sloan is an ovarian cancer patient.  Her doctors at MD Anderson say that due to her treatment history, traditional, available therapies will no longer be tolerable by her body.  BioMarin pharmaceutical has had a drug in trials that the FDA has indicated it will permit Andrea to use if the company will give it to her.  BioMarin has promoted this particular drug, BMN673, to investors as the safest and most effective drug of its type.  But to Andrea and her doctors, the company says they just don’t know if it is safe enough.  Over the last few years, the FDA has allowed over 3,000 patients to use drugs that are not yet approved as, basically, a last resort; while denying only a handful of such requests.

What Not To Do if You Are a CEO

Supporters of Andrea Sloan have used social media and letter writing campaigns to appeal to the company in hope they will allow her and others who face her circumstances a last hope.  The letters that I have seen range from heartfelt appeals for moral and ethical behavior, to logic and business reasons it would make sense for the company to grant Andrea compassionate use of their drug.

For a couple weeks, most of the emailed letters Andrea’s supporters sent to the company went unanswered.  Over the last few days, though, that changed; and in a somewhat dramatic manner.

BioMarin’s CEO, Jean-Jacques Bienaime, suddenly started replying to the emailed letters. Far from the measured, careful responses one would expect to come from the CEO of a company, Bienaime resorted to insulting language and at times, unable to come up with his own words describing his perspective, forwarded someone else’s email calling Andrea Sloan “petulant” and “spoiled” as his response.

In Bienaime’s “reply-all” email discussed last week, he laid out two strategies for fighting Andrea:  1. Contradict her doctor’s conclusion that BMN673 is the only drug that has a potential of helping, and 2. Hire a PR firm.  Bienaime made good on the aim to contradict Andrea’s doctors in a national media appearance, but BioMarin is apparently still in need of a PR firm; and one which specializes in crisis management at that.

The email exchanges:

What follows is an email exchange; the first from a supporter of Andrea to Bienaime, the second, his reply to that email:

email1


email2

Beyond it being difficult to understand why his reply is about insurance coverage, which has nothing to do with the situation at hand, his tone is entirely inappropriate.  Does BioMarin’s Board of Directors support their CEO’s statements?  How do his investors feel?  If the company had any type of crisis management plan in place, Bienaime’s responses would not have fit within it.

To another supporter of Andrea, instead of writing his own reply, Bienaime simply forwarded someone else’s words as his response.  The email is far too long to paste here in its entirety, but toward its conclusion, it reads:

email3

On social media, supporters of Andrea were livid and a number of them wrote the CEO in complaint of his having endorsed that perspective of Andrea.  Here is an excerpt of Bienaime’s reply relevant to those complaints:

email

No matter what kind of email the CEO of a company gets, this kind of response is never the correct reaction. How does the CEO of a public company think these replies will help his company in any way? And surely he understands that by writing no words of his own in response and simply forwarding someone else’s words instead; those words become his own.

Also of concern: licensing

Given that BioMarin’s primary strategy to deny Andrea the drug is to disagree with her doctors at MD Anderson regarding the availability of other options, it came to a surprise to Andrea Sloan that the Chief Medical Officer of the company let his license lapse a few days short of five years ago.  According to The Medical Board of California and referencing the date on the image below, if Dr. Fuchs does not renew his license by the end of this month the license will be canceled entirely.

medical

While it is not illegal for Dr. Fuchs to serve BioMarin as its Chief Medical Officer without an active medical license, there has been controversy in other places where problems have occurred in entities which had a non-licensed doctor as its CMO.  In this situation, Andrea Sloan feels mislead because she was told that she needed to sign a waiver so that her doctor at MD Anderson could talk to their Dr. and Chief Medical Officer.

Because of communications Dr. Fuchs has had regarding Andrea Sloan’s medical condition and the company’s insistence – amounting to medical advice – that she has other options, at least one Texas Legislator has agreed to file a complaint to the Medical Board of California for there to be an investigation into whether or not Dr. Fuchs actions amount to practicing medicine without a license.

How Does This End?

BioMarin, some argue, is justified in deciding to wait until later in the drug’s trial process before dispensing it outside of trials for any reason.  But even setting aside bioethical and moral issues surrounding the ability of a dying patient to have every treatment available that has shown promising results, how can the company justify promoting the safety and efficacy of the drug to investors if they will not stand behind those claims with critically ill patients?

Crisis management can get somewhat complicated at times, but for the most part, common sense dictates the bulk of it.  BioMarin, and its CEO in particular, has gone off the rails in their response to the tens of thousands of people who have called on them to provide compassionate use to Andrea Sloan.  At this point, the source of the damage that is occurring to the reputation of the company is happening not because of the actions of those contacting the company, but because of the actions of the person who is supposed to be capably guiding the company.

In a situation like this, if I were advising the company as a Crisis Management consultant, I would go directly to the other board members running the company and suggest they sideline the CEO for the duration of the crisis and set forth in a new direction that is less damaging to their mission as a company.

Note: as of publication, the BioMarin PR department has not responded to a request for comment regarding the validity of these emails.

David Holmes, owner of Intrepid Solutions, has over 20 years experience planning for, avoiding, and solving crises in the public policy, political, and private sectors. David is also a professional mediator and has worked in the Texas music scene.

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16 Comments

16 Comments

  1. Deanna L. Kuykendall

    September 24, 2013 at 5:04 pm

    David, you hit the nail on the head! BioMarin has botched Andrea Sloan’s request for compassionate use from the get-go. It’s been like watching the movie Dumb & Dumber. How can a global pharmaceutical firm get it so wrong? Saying yes to Andrea Sloan’s request should have been an easy decision. I agree with you, the Board of Directors needs to sideline the CEO and CMO and let a crisis management expert get this derailed PR disaster back on track. And before that, tell Andrea Sloan it is going to give her access to the drug her doctors believe is her last hope.

  2. Terry Lynne Stulik

    September 24, 2013 at 5:35 pm

    BIOMARIN – YOUR CEO NEEDS TO GO! Investors and Board will agree!
    BioMarin CEO calls terminal cancer patient a “spoiled petulant brat” https://agbeat.com/business-marketing/public-relations/biomarin-ceo-email-meltdown/ … via @agbeat- GET RID OF BIENAIME, BIOMARIN!

  3. Dorothy Ayer

    September 24, 2013 at 10:22 pm

    Biomarin wouldn’t need a PR firm if they’d can their spoiled petulant CEO. And THEN put the investors big bucks behind them and help this young woman.

  4. justme

    September 24, 2013 at 11:13 pm

    I wish someone would interview Andrea’s doctor at MD Anderson again. How did this drug, tested on 28 women, results unpublished/unknown, become her ‘last hope’ for treatment, according to him? Seriously, can her doctor please explain this?

    • David Holmes

      September 25, 2013 at 12:53 pm

      The results have been published; you can easily find them in a Google search. And, the CEO and CFO and been going around telling everyone what the results have been. If you would like audio of them saying precisely and scientifically what the results were, I will be happy to send that to you.

  5. Dorothy Ayer

    September 25, 2013 at 11:27 am

    Food and Drugs Administration a lot of times just rubber stamp test results. Biomarin’s constant red herring and inappropriate comments and responses is bringing FULL attention from the FDA. I hope the FDA searches them with a magnifying glass; and I mean ALL OF THEIR DRUGS THEY HAVE IN DEVELOPMENT. In fact, I would encourage people to start copying their letters they send to Biomarin and forward them to the FDA, requesting a CLOSER look to all of their in-testing drug trials and manufacturing.

  6. MarkBMorrow

    September 26, 2013 at 8:10 pm

    I guess Mr. Bienaime would sound like a spoiled petulant brat if he was pleading for the chance to save himself from certain death.

  7. JoshGrot

    September 27, 2013 at 11:22 am

    What’s so particularly sad and frustrating about situations like this is that the public can’t just protest with their wallets and avoid using the company’s products to send a meaningful message back to the company that would change its behavior.

    It seems that big pharma companies with de facto monopolies on potentially life saving medications can do just about anything they want as long as they get the drug to market (and it proves to be effective in saving lives).

  8. Shelly Curran

    September 30, 2013 at 11:29 am

    Problem number one is that he’s French. Problem number two is that he has writers remorse and then lies about it. How is this man a CEO of anything? The woman is dying so who cares if the drug is experimental. She wants a chance. It’s not like her family is going to sue him if she dies, duh!!

  9. David Holmes

    October 1, 2013 at 6:53 pm

    I don’t completely understand this process, but they don’t pay for the trials – other entities do. So it may be as simple as that a breast cancer focused entity stepped up first.

  10. Ellis Meret

    October 3, 2013 at 2:01 pm

    When your CEO starts rattling off replies with insulting, rude, ignorant, and condescending language, that’s THE sign your company needs a PR firm. lol. And all those leeches do anyway is distract the public so companies can rub their hands together in the usual way.
    Money and power turns people into corrupt scumbags. So does this corporate culture in general it would seem.

  11. jan l

    October 4, 2013 at 9:21 am

    took the words right out of my mouth! this man has cancer of the heart that has metastasized to his conscience.

  12. Miles Howard

    October 9, 2013 at 1:25 pm

    Wow. I wonder what would Jonas Salk say?

  13. paperdetective

    October 26, 2013 at 7:17 am

    I have communicated by email with Biomarin in the last few weeks to try get information on their PARP inhibitor drug for my type of patients.It was terrible. They took their sweet time to respond and first had some kind of $10 an hour ignorant brat answer with canned useless responses and, when I pushed back, they took even more time to respond and it was just a ‘don’t bother us’ brush off again.

    Never had that before with any other company, researcher or doctor. Those all responded with informative helpful replies, which I could pass on to fellow patients to help. With some I’m still in touch regularly.

    From the trail of BioMarin’s email headers, I can see they have outsourced their communications. Not to their advantage though. It should not be outsourced, since someone who understand the highly technical subject matter and is committed to his company and understands cancer patients and researchers, should answer. Instead we get bureaucratic answers as if we were talking to government insteda of a business with a profit motive.

    It makes one wonder if their product is really that promising. If a vendor does not love the customers which he is going to sell his product to, which is how BioMaribn sounds, then why are they in this business at all?

  14. Pam Clark

    October 31, 2013 at 7:57 pm

    With BioMarin involved (as it should be) with its clinical trials, I suspect that their patient sampling might not be appropriate, and with all of the publicity their data will be highly scrutinized. However, as long as they have control over the initial population sample being tested, they can still present inaccurate data to the FDA. Sloan presents what would be an unknown (but perhaps in this case – a known condition with lots of documentation and tests). I think BioMarin’s CEO is freaking out because their product will not pass muster in the real world.

    Their Q1 earnings for 2013 (documented conference call:)
    Naglazyme, Q1 2013 sales of $69.4 million
    Kuvan, sales of $37.6 million

  15. Pingback: Dead On Arrival: Federal "Compassionate Use" Leaves Little Hope for Dying Patients - Right to Try - National Movement

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Opinion Editorials

20 bullsh*t buzzwords that should be banned from tech forever

(OPINION) As the language of tech ebbs and flows, there are linguistic potholes so over-used, so annoying, they make you want to scream. Here’s 20 of the worst offenders.

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There’s specific lingo in any industry. Buzzwords, if you will. Get a group of friends who work together for beers after clocking out, and chances are you’ll get lost quickly once they start trading war stories – outsiders beware.

But, there’s one community who puts even nurses (marry a nurse, and you’ll learn what prophylaxis means) to shame with insider speak and bullshit buzzwords: the tech community.

Tech folks are like business and marketing people but mutated. There’s so much free-flowing jargon that goes unchecked and evolves a la Origin of The Species within days. The words and phrases become gospel and, before you know it, people are sharing these nonsense phrases that become the industry norm, leaving anyone on the outside scratching their heads, trying to decipher the tech code.

But, as the language of tech ebbs and flows, there are linguistic potholes so over-used, so annoying, they make you want to scream. There are words used so out of context that make you want to turn them into a snarky meme and pass it around the office because you’re a jerk like that. (Well, I’m at least a jerk like that.)

These are some of those words.

The words that need to die a horrible, 24 hour, “what does it all mean” death.

Words that should be locked away in a prison so vile Charles Manson would be like, “Nah, bro. I’m good.”

Please don’t use these words in your marketing, pitch meetings, or just ever. They suck.Click To Tweet

Strap in and lock it down, here we go:

1. Sync
Can’t we just say “everyone knows what’s going on” instead of sync? This is one of those metaphors alluding to tech as melded with the products and culture, serving as interchangeable. We’re people, not iPhones to be plugged into our laptops. We don’t need to sync. We can meet up.

2. Robust
Robust is coffee, a strong tea you imported from India. It’s not a tech software experience. A can of Folgers can claim to be robust, your project tool cannot share this claim.

3. Pain point
Are we still using this one? A pain point is an elbow that’s got an owie, not what a customer thinks sucks.

4. Delight
I’m delighted to eat an excellent meal or get an unexpected call from an old friend. I’m delighted to leave work early to have drinks. I’m not delighted to use enterprise software. Sure, it makes my day easier. Does it offer a view of heaven when I can use self-service? I think not.

5. Disrupt
One of the godzillas of Jargon Mountain. I get that this worked in context a few years ago. But, now? You’re not “the Uber of…” and you’re not “disrupting” anything.

You built a parking app, Pat. You didn’t change the world.

If you dethrone Facebook, you’ve disrupted the world. ‘Til then, keep your pants on. Your algorithm for the best pizza place in town ain’t changing the block, let alone the face of communication.

6. Game changer & Change agent
Does anyone buy into this one? Was the game changed? This goes in the bin with “Disrupt.”

7. Bleeding Edge
Some jerk in some office decided “the cutting edge” wasn’t enough. It wasn’t hyper progressive enough, so they labeled their work the “bleeding edge”.

If this phrase were any more douchey, it would have a neck beard and a fedora and argue the tenants of socialism on IRC with strangers while sipping Mountain Dew.

8. Dog food
Who came up with this? When did a beta test get labeled as “dog food” I’m still lost on how this one became the industry standard. “We’re eating our own dog food.” This doesn’t even make a lick of sense, people. Just say we’re testing something. It’s a lot easier.

9. Alignment
What happened to just saying you agree? I thought alignment was for tires, not for working. I’ll give you parallel, but alignment? Not buying it.

10. Pivot
Pivot is just a fancy, non-finger point-y way of saying change. And typically, that change is reacting to something not going the company’s way. “Pivoting” means reacting to bad news or undesired outcome and making everyone involved feel smarter about the process.

11. Revolutionary
Unless you’ve built software that cures cancer, does something better than Elon Musk, or gets you laid faster than Tinder, you’re not revolutionary. You’re an element of evolution in a steadily progressing world.

12. Internet of Things
I still don’t even know what the hell this means. Really. It’s one of those phrases people use and pretend to know but really don’t.

13. Bandwidth
I thought bandwidth was Internet stuff, not how busy you are at work. Can’t we say, “if you’re not too busy,” instead of, “if you have the bandwidth,”..?? These are people, not routers.

14. Low-hanging fruit
You mean the easy work? “Easy win” even applies here. But the whole gardening metaphor is tired. It’s ok to say, “Do the easy work first” in a meeting. Hiding behind a metaphorical phrase doesn’t make the work any less important.

15. Deliverables
Do we need to break everything down into words to make the process more complicated? Aren’t deliverables, just work? It’s an adjective to describe what work you’re completing… so… it’s just work. Throw in a “key, ” and you’re jargon-y as all get out.

16. Circle Back
Translation: I don’t want to continue talking about this right now, so I’m going to schedule more pointless meetings to discuss this thing I don’t understand and don’t want to talk about in a few days. Likely, scheduled on your lunch break.

17. Action item
What happened to the good ole’ “to do List”? Instead, we’ve got “action item”. You come out of a meeting with a sore ass. The boss pounds on your for the stuff you need to do. You’re up to your ears in homework, yet, it’s not work you need to do – it’s “action items, to be delivered upon.” WHAT THE HELL DOES THIS EVEN MEAN?

18. Take it offline
If there was ever painful corporate-speak, this one is a granddaddy. Instead of burning minutes in a meeting, someone will announce, “let’s take it offline.” Always happens. What about, “let’s talk about this face to face,” or “I’ll swing by your desk”, or “let’s figure this out.”

We appreciate you not annoying the rest of us with your A+B problem, but we’re not all living in the matrix. Or, at least we think we’re not.

19. Buy-in
Committing to something – a culture, an idea, a feeling. We’re equating life to a poker game and expecting everyone to get the idea, too. So lame.

20. Rockstar – Ninja – Wizard – whatever descriptive verb
This one. Holy horse crap. Can we PLEASE STOP with trying to slap a descriptive label on good work? I get it. You want to exclaim your person is a badass, and they’ve got chops. But this labeling of people in fantastical ways just sucks. When did the craft of a ninja, or the fantastical abilities of a wizard relate to code? And the rockstar thing?

Dudes, you’re not Keith Richards, you wear a startup hoodie and complain when you’re not getting free lunch at work.

Also, these names suck because they imply some male-dominance-cum-brogrammer mentality. They’re shadowy ciphers that are such machismo, it’ll barf up a steak. When a woman gets labeled a “ninja” it’s in an entirely different context, and that’s not cool. Writers have to get creative and use terms like “acrobat” or “juggler” to give off a sentiment of equal playing field, and it’s obnoxious. Just stop with these lame titles.

And there you have it. 20 bullshit buzzwords that should be banned forever and ever. Comment away, and add the jargon you loathe in the comments section. If it goes well, maybe they’ll ask me to write a part two, and we’ll make even more people mad.

This editorial was first published here in 2017.

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Opinion Editorials

Study says women need to be seen as “warm” to be considered confident

(EDITORIAL) A new study reveals that despite progress, women are still successful when they fall into a stereotype. Let’s discuss.

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About 15 years ago, I took a part-time job in a mental health clinic handling bookkeeping and billing. I had absolutely no idea what I was doing, but I attacked the job with what I felt was confidence. For the first few days, I simply felt as if I was an imposter. I kept asking questions and pushing forward, even though I didn’t make much progress. Within just a few days, I felt the hostility of the office manager.

It got progressively worse, and I couldn’t figure out what the heck I’d done to make her so confrontational with me. I thought I was pleasant and respectful of her position, and I was getting along with the other employees. When I talked to our boss, I was told that I intimidated the office manager. HUH? Me? Intimidating? I was a complete mess at the time. I could barely put together a business casual wardrobe. My emotional health was so fragile that I rarely went anywhere new. And she found me intimidating?

Researchers have been studying how people judge others. Susan Fiske, researcher out of Princeton, found that competence and warmth are two of the dimensions used to judge others. Based on that research, Laura Guillén, Margarita Mayo, and Natalia Karelaia studied the competence and warmth at a software company with 236 engineers.  Guillén and her team collected data at two separate times about these engineers and their confidence and influence within the organization.

They found that “men are seen as confident if they are seen as competent, but women are seen as confident only if they come across as both competent and warm.

Women must be seen as warm in order to capitalize on their competence and be seen as confident and influential at work; competent men are seen as confident and influential whether they are warm or not.”

We encourage women to be confident, but based on current research, it may not be enough to close the gender gap in the workplace. A woman must be seen as helpful and dedicated to others to have the same influence as a man. As a woman, it’s easy to be seen as the #bossbitch when you have to make tough decisions. Those same decisions, when made by a man might be considered just “business as normal.”

I guess the lesson is that women still have to work twice as hard as men just to be seen as equals. I know that I have to work on empathy when I’m in an office environment. That office manager isn’t the only person who has thought I’m intimidating. I’ve heard it from it others, but you know what? As a self-employed writer, I’d rather be seen as undeterred and daunting than submissive and meek.

This editorial first appeared here in 2016.

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Opinion Editorials

Don’t avoid starting a business just because you’re broke

(EDITORIAL) If money isn’t always a prerequisite to entrepreneurship, how can you start something from nothing?

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Breaking into the business world can be an intimidating venture, especially if you don’t have the money or experience to back up your ambitions. Experience, however, can be earned – or at least approached through a “fake it until you make it” style approach. But what can you do if you dream of launching a business but you don’t have the cash? Is money a prerequisite to entrepreneurship?

Money helps but isn’t a requirement for those hoping to start their own business – you simply need to get creative. If you’re not sure where to start, here are a few things to consider.

One of the best ways to build your confidence around the topic of entrepreneurship is to refocus your attention towards those who also started from nothing, but have since made it big.

Steve Jobs started out tinkering in his garage as a teenager and went on to found the tech giant Apple, while multimillionaire consultant Sam Ovens publically discusses his finances – he was broke just a few years ago but had made over $10 million dollars by the time he turned 26.

Such stories attest to the fact that anyone can ascend to great heights.

Even though many people think money is the most important part of any business endeavor, successful people will tell you that true self-understanding far outranks cash on the list of necessities. Take some time to reflect on your goals and on how you view yourself as you pursue them.

If you think you can’t achieve your goals, then you won’t be able to. The mind is a very powerful thing.

If introspection reveals that you’re low on self-esteem, work on improving your view of yourself and begin developing a more positive perspective. You may find it helpful to write down what you think and then revise this description, working all the time to internalize this improved view of yourself. Though it may seem like a pointless process at first, you’re actually participating in your own transformation.

Another key determinant of success that far surpasses money is passion.

People succeed when they pursue goals that matter to them on a deeper level.

Typically this is the case because passion leads you to accumulate expertise on your chosen topic, and this will draw people to you.

One incredible example of the transformation of passion into profit is 17-year-old Jonah, who makes thousands of dollars a month selling watches online. Jonah comes from a family of jewelers, so he had ready access to the necessary knowledge and cultivated an outstanding selection of timepieces on his site, but it was his ability to combine his material knowledge with real understanding of his customers that made his business successful.

At the end of the day, he wanted his customers to have the perfect watch, and he brought his own passion for the field to bear on creating that experience.

Finally, if you hope to start a business but don’t have any cash resources, the best thing you can do is learn your field and network with those in it – without bringing them on board as professional partners.

It helps to have contacts, but you can’t grow a fledgling business by paying others to do the hard work.

Hunker down and work from home, working at night if you have to keep your current job, and start from the position of humble aspirant. If you show you’re committed to the real work of starting a business, you’ll find that others support you.

If you hope to start a business, but don’t have the money, don’t despair – but also don’t put your dream on hold. The only way to build the foundation you need to live that dream is by doing the hard work in the here and now.

Lots of people started just where you are, but the true successes are the ones who had the courage to push past the barriers without worrying about the financial details. You already have what you need, and that’s the passion for innovation.

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