Book Excerpt from The Power of Rare

In chapter 4, “Building a Cure Machine,” author Victoria Jackson reveals the challenges in launching a foundation focused on funding research on a rare disease.

| 3 min read

Register for free to listen to this article
Listen with Speechify
0:00
3:00
Share

Regan Arts, September 2017Curing a disease is not for wimps.

Even before the ink was dry on our foundation charter, that was something I knew instinctively. And it has served as a mantra ever since—a reminder that has kept me on my feet, especially on those fearful days when all I’ve wanted to do was curl up in a fetal position in the corner. Now that we’d gotten everyone into the room and had created incentives for sharing, the greater challenge was figuring out how to translate all that brilliance and life-saving science and patient insight into the moving parts of a real-world, practical delivery mechanism for change.

Such was the vision for our cure machine.

Questions and challenges abounded. Not just what had to be done—but how. How did we connect and synchronize our ...

Interested in reading more?

Become a Member of

The Scientist Logo
Receive full access to more than 35 years of archives, as well as TS Digest, digital editions of The Scientist, feature stories, and much more!
Already a member? Login Here

Keywords

Meet the Author

  • Michael Yeaman

    This person does not yet have a bio.
  • Victoria Jackson

    This person does not yet have a bio.
Share
Image of a woman in a microbiology lab whose hair is caught on fire from a Bunsen burner.
April 1, 2025, Issue 1

Bunsen Burners and Bad Hair Days

Lab safety rules dictate that one must tie back long hair. Rosemarie Hansen learned the hard way when an open flame turned her locks into a lesson.

View this Issue
Unlocking the Unattainable in Gene Construction

Unlocking the Unattainable in Gene Construction

dna-script-primarylogo-digital
Concept illustration of acoustic waves and ripples.

Comparing Analytical Solutions for High-Throughput Drug Discovery

sciex
Explore the tools available for studying histone modification.

Tools for Studying Histone Modification

Cayman Chemical Logo
An illustration of a colorful DNA molecule.

An Early Window into Biological Change and Disease Development

biomodal logo

Products

Green Cooling

Thermo Scientific™ Centrifuges with GreenCool Technology

Thermo Fisher Logo
Singleron Avatar

Singleron Biotechnologies and Hamilton Bonaduz AG Announce the Launch of Tensor to Advance Single Cell Sequencing Automation

Zymo Research Logo

Zymo Research Launches Research Grant to Empower Mapping the RNome

Magid Haddouchi, PhD, CCO

Cytosurge Appoints Magid Haddouchi as Chief Commercial Officer