The Power of Networking

This is a business post.

My daughter was eight years old when she was diagnosed with Usher syndrome.? She had been born deaf.? We were told that the diagnosis meant that she was also now going blind.? Devastated, we could hardly conjure any questions from the despair.? In the end all we got from the doctor was this:? Your daughter is deaf.? She is going to go blind.? There are no treatments.? The disease is so rare that you are unlikely to meet anyone else who has it.

My life as I knew it, as I expected it to unfold, ended in that doctor’s office.

I did manage to ask one pertinent question:? “Isn’t there anyone who is working on this?”

The doctor thought about it then said, “Well, there is this one guy in Iowa.”

So I called the one guy in Iowa.? A few months later, we packed up our kids and drove out to meet him.? He more or less confirmed what we had been told: Deaf, blind, no cure, very rare.? Enough time had passed that the fog of despair had soaked into more of an everlasting dull ache.? With my head clearer and my heart more stout, I asked three questions that changed everything.

“Do you know anyone else working on treatments?”

“Do you know any other families with the disease?”

“How can I help you?”

This time I got two leads.? There was a guy in Sweden working on treatments.? There was a family in Seattle with a son the same age as my daughter who had recently been diagnosed.? So I contacted them.? And my new life began.

For the next ten years or so I spent my life asking people those three questions.

“Do you know anyone else working on treatments?”

“Do you know any other families with the disease?”

“How can I help you?”

Each time I would make one, two new connections.? I would share with them what I had learned, the names of the people I knew, the other researchers working on the disease.? My network grew and grew and grew.? I started having weekly conference calls where I invited doctors, researchers, and families to speed up the process of connecting.? Others joined in and helped.? A community started to grow.?

Usher syndrome is a disease of isolation.? Helen Keller famously said “Blindness separates people from things, deafness separates people from people.”? Many people with Usher syndrome felt horribly alone.? Those phone calls, those connections, changed lives.? I know it changed mine.

From all of this grew the Usher Syndrome Coalition.? At last check the Coalition was helping families and working with researchers in seventy-two different countries.? There have been wonderful, amazing organizations that have used that network and their own intrepid ideas to offer support to families with Usher syndrome in ways that seemed impossible to consider when my daughter was first diagnosed.? There are not yet treatments for Usher syndrome, but we are no longer alone.? If Usher syndrome is a disease of isolation, we’ve at least cured that symptom.? All because I called this one guy in Iowa.

But this is a business post and I feel like I am lousy at business networking.? I am much better connecting at a personal level, particularly when there is a problem to solve.? Which brings me back to the power of networking.

Looking back, what made my efforts successful is that I offered more than I was asking for, even if that wasn’t clearly the case early on.? I offered five things, really:

1)????? A chance to talk about your work (for the researchers) or about your family, yourself, your feelings (for families).

2)????? Connections to others in your field or with the same problems.

3)????? Connections to things you needed.? For families, that was access to researchers and their knowledge.? For researchers, that was access to families for studies and for funding.

4)????? My help.

5)????? Hope.

The truth is I don’t know why I differentiate my Usher syndrome networking success from my business networking, uh, less success.? My successful business connections have revolved around those same five things.

1)????? Tell me about yourself.? And I mean the good stuff.? What really matters to you?

2)????? Connections to others.? I may not be able to offer you much, but maybe I know someone who can.

3)????? Connections to things you need (and are hopefully willing to pay for)

4)????? My help.

5)????? Hope that whatever problem you are facing, what really matters to you, will get fixed.

If you’d like to talk, about anything really, I’d love to connect.? I’ll share whatever I can and am more than willing to help.? Networking changed my life for the better and I’ve never regretted meeting one more person.

If you’d like to support the Usher Syndrome Coalition, you can find them here.? Thanks for reading.