<p>Effie Parks immediately connected to rare disease podcasts when her son Ford was diagnosed with CTNNB1.  However she soon caught up with all of the episodes and came to the end of her lifeline.  So she created the thing that she needed the most.  She connects with other rare disease parents and many others in the Rare Community through her incredible podcast <a href="https://effieparks.com/podcast" rel="noopener noreferrer" target="_blank">Once Upon a Gene</a>.  Listen to this episode to get insight on the value of connecting to others.</p>

Effie Parks immediately connected to rare disease podcasts when her son Ford was diagnosed with CTNNB1. However she soon caught up with all of the episodes and came to the end of her lifeline. So she created the thing that she needed the most. She connects with other rare disease parents and many others in the Rare Community through her incredible podcast Once Upon a Gene. Listen to this episode to get insight on the value of connecting to others.

<p>Effie Parks immediately connected to rare disease podcasts when her son Ford was diagnosed with CTNNB1.&nbsp; However she soon caught up with all of the episodes and came to the end of her lifeline.&nbsp; So she created the thing that she needed the most.&nbsp; She connects with other rare disease parents and many others in the Rare Community through her incredible podcast <a href="https://effieparks.com/podcast" rel="noopener noreferrer">Once Upon a Gene</a>.&nbsp; Listen to this episode to get insight on the value of connecting to others.</p>

129 - She Created What She Needed - Effie Parks

The 2DD podcast is about setting sights beyond the challenges in your life and dreaming big, making a plan, and then executing like mad.  You are guaranteed an emotional rollercoaster, and practical thoughts that you can apply to your life with this podcast.

Hosts Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA).  FA affects their balance and coordination, significantly limiting their physical abilities.  However both dudes have completed several long distance bike rides including “The World’s Toughest Bike Race” - Race Across America (RAAM).  Their RAAM journey is the subject of an award winning documentary called The Ataxian. Kyle rode his trike to the top of the highest paved road in North America and Sean ran with the Olympic Torch.

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The 2DD podcast is about setting sights beyond the challenges in your life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster, and practical thoughts that you can apply to your life with this podcast. Hosts Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA). FA affects their balance and coordination, significantly limiting their physical abilities. However both dudes have completed several long distance bike rides including “The World’s Toughest Bike Race” - Race Across America (RAAM). Their RAAM journey is the subject of an award winning documentary called The Ataxian. Kyle rode his trike to the top of the highest paved road in North America and Sean ran with the Olympic Torch. Join us, subscribe, and tell a friend!

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129 - She Created What She Needed - Effie Parks

129 - She Created What She Needed - Effie Parks

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