A few months ago, I was featured in a blog on Executive members for LinkedIn. It was focused on the series called “Behind the Mystery: Rare & Genetic Diseases” that I am producing for The Balancing Act’s morning  talk show on Lifetime TV. The blog post discussed how I utilized LinkedIn’s tools and network to help create the series.

I guess the story was compelling because as I heard it, the article had shimmied its way up to the top executives at LinkedIn, and I was soon invited to share my story and be part of a member panel where I would speak to 2000 sales people at their Global Sales Kickoff in San Francisco.

I wasn’t suprised to meet the incredible team that LinkedIn has working for them. They are all about the members, and I felt like royalty from start to finish. Global Genes also went into quick action by supplying the sales force with the Global Genes awareness ribbons. And our wonderful moderator actually wore hers on stage! Turns out she is part of the rare community as well with her two affected nieces.

Rare is everywhere.

Nicole Boice reminded me before I left for the trip that I am not just a TV producer, I am a member of Global Genes. It is a different state of mind to be an activist and proclaim it. Very humbling to know that the mission you started with to find a name for your daughter’s disease has turned into 13 segments on a national television show, an invitation to educate a major corporation, emails from individuals that I can now personally supply contacts to— all to help them find their footing in this new “Rare World.” Even though I have seen the fruits of Global Genes’s incredibly passionate efforts, I can not help but recognize that I’m only at the start of this journey as an advocate. What else is possible?

Carri Levy is the Senior Associate Producer for The Balancing Act. As a mother of a of a child with an undiagnosed rare disease, she knows firsthand the heartache of searching for an answer.

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