I’m Baaaaaack!

Well, hello!

It’s been awhile, I know.

I swear to you all that I have made attempts at posts… 11 to be exact. Yes, 11 different drafts that I started, got distracted from, added a bit more too, became side tracked again and then just completely forgot about… because… L I F E. I am not even going to go into everything that has transpired over the past couple of years, months, etc. If you know me or follow me on social media, then you have a glimpse into the chaos.

I’m here to share something with you. Well, a couple of things, actually…

  1. Life has not felt this good in a REALLY long time. It’s almost scary for me to admit that [knock on wood] as I wait for a proverbial shoe to drop. All aspects; work, physically, mentally, emotionally, ALL the things!
  2. I have had some incredible opportunities lately and what I am about to share with you was one of them.

As some of you may know, the FDA approved VOXZOGO by BioMarin for children with achondroplasia, ages 5 and up. And there are other companies with therapies coming down the pipeline. QED and Bridge Bio are an amazing example. I was introduced to Anne and David a couple of years ago in Spain when I went to visit the ALPE Fundacion. Ever since, I have been working closely with them as a woman with achondroplasia and an advocate.

Recently, they reached out inquiring if I would be interested in interviewing for their podcast On Rare where they discuss the triumphs and challenges of living with a rare condition. Obviously my answer was 100% YES. I think David and I ended up speaking for almost 90 minutes. We laughed, got emotional, raw and real. All of that was whittled down into a 45 min program also featuring my friend Anne who is a patient advocate with QED.

Last night, before I went to bed, I listened to it. Usually, I hate the sound of my own voice. This was different. There was something about the confidence in my speaking that stood out to me. And I know why. For the first time in my life, I know, with 100% confidence, that I am exactly where I am supposed to be. And that is a feeling that exudes so many different emotions, I cannot even begin to explain. All I can really say is that I am truly grateful.

Take a listen. Give me feedback. Ask questions. Please?!
Listen here.

Thank you to David, Anne, Bridge Bio and QED Therapeutics for the opportunity.

So much love.

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