RunTheBluegrass, running, live in the moment, fight

Newly Diagnosed: You Are Not Alone on Your Journey

Whether you are a patient or a caregiver, it’s important to remember that you are not alone on this journey with Batten disease and that others have been in your shoes. Here’s a collection of our columnist’s words to help guide, inspire, and encourage you.

3.1 Ways to Fight Your Rare Disease

Living with a Batten disease diagnosis can be overwhelming. Columnist Laura King Edwards shares a list of ways patients and caregivers can live their best life and keep fighting. They include demanding better, embracing what you have, laughing, and having faith.

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9 Things We Should Know About the Race to New Treatments

Therapy development for a disease like Batten is a like marathon and it’s not for the faint of heart. Here she shares some insights on what she’s learned about the race to develop therapies for Batten and what it will take to get to the finish line.

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Rare Disease Therapy Development: Finding a Way Forward

Laura discusses rare disease therapy development in an interview with Vivian Fernandez, senior director of patient advocacy at Regenxbio. They cover a lot of ground, but Fernandez’s final piece of advice is, “You have to find the way forward.”

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Batten Disease: Life, Interrupted

Laura reflects on the profound changes 2020 has brought, including sidelining her from running to honor her sister. Her fight against Batten disease isn’t slowing down, and she is looking forward to the day when she can run again for her sister.

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