Blog

Hear community perspectives on topics ranging from navigating a diagnosis to reflecting on clinical trial experiences.

March 2, 2026
Cure Rare Disease and LGMD2L Foundation Announce Multi-Year Partnership to Develop Gene Therapy for Anoctamin 5-Related Disease

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Our Homeschooling Experience

My husband Keven and I have 3 kids and we’ve been homeschooling for more than 10 years. Here’s a little background of how we got here.

The Role of in-vivo Studies in Rare Disease Therapeutic Development

Experiencing the Science as a Rare Disease Family

Let Heaven and Nature Sing

Jessica Curran is a DMD mother to her son Conner, CRD board member as well as a DMD patient advocate.

Research Spotlight: The Ivakine Lab

Latest Perspectives

March 1, 2021
Sara Aluffi
My Child in Disguise
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February 28, 2021
Rare Disease Day 2021: Building a Successful Career Despite a Rare Disease
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February 8, 2021
Overcoming Obstacles: Building a Successful Career in an Inaccessible World
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February 1, 2021
Finding Career Motivation in a Rare Disease Diagnosis
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January 18, 2021
30 With DMD: Finding My Life’s Purpose
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January 14, 2021
Cure Rare Disease
OUR PROUDEST PRESS: 2020
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January 12, 2021
Cure Rare Disease
Navigating Entrepreneurship and Motherhood While Battling SMA
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January 1, 2021
Cure Rare Disease
A Look Back at 2020, and Happy New Year!
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December 28, 2020
Cure Rare Disease
From the Mom of CRD’s first patient: Thank You
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December 21, 2020
Cure Rare Disease
Rare Disease During The Holidays
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December 14, 2020
Terry Horgan
Terry Horgan’s Career with Duchenne
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November 24, 2020
Gem Godfrey
Overcoming Adversity: A Rare Disease Artist
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November 9, 2020
Beau Bryan
Double Whammy
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November 2, 2020
Cure Rare Disease
He’s Going to be a Pro Football Player
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October 26, 2020
Grandpa, John Jackson
From Theory to Reality: a Grandparent’s Perspective on a DMD Diagnosis
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October 20, 2020
John Benyamine
Games Can Help
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October 5, 2020
Katie Gauss
When Your Best Friend’s Son gets a Duchenne diagnosis…
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September 30, 2020
Karen Morales
The Daily Contradiction of Living With LGMD
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September 21, 2020
Sarah Krieger
Traveling with Duchenne: A 6-Week Cross Country Road Trip
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September 7, 2020
Sarah Krieger
Keeping Hope In The Fight Against Neutralizing Antibodies
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August 17, 2020
Cure Rare Disease
The Clinic and COVID — Family Perspective
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August 3, 2020
Beth Harvey
Celebrating 2 Years of the Duchenne Program at UMass Memorial
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July 10, 2020
Sarah Krieger
Duchenne Tips from a Rare Disease Mom
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June 29, 2020
Steve Gunther
Introducing Our Newest Founding Ambassador: Steve Gunther
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