Lightnews — Scholar-powered news

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Susannah Fox @susannahrfox.bsky.social · 7d

Novartis was not sure that they should invest in a cure for such a rare disease, but patients organized a petition that reached the CEO & a Phase II trial was approved.

susannahfox.com/2023/12/21/w...

Wow! How? Gleevec

Dan Quinn’s unusual exercise brought the Commanders closer — and helped them surprise the NFL

Susannah Fox @susannahrfox.bsky.social · 7d

There's precedent for patients demanding - and winning - access to a drug that saved them in a clinical trial: Gleevec. I hope patients win here, too.

The Sick Times @thesicktimes.org · 11d

A group of 53 people with #LongCOVID joined a clinical trial for Vyvgart. For many of them, the treatment changed everything.

Then, without warning, Argenx canceled the trial.

Most of them have now relapsed.

They're calling on the NIH and HHS to study the drug: bit.ly/48l1Qp5

A photo Nicole Barrick, a woman in a pink KN95 mask, receives an infusion of Vyvgart. The text reads, "The Sick Times. Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug. By Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White."

"For those living with Long COVID, every ounce of hope is hard-won. This isn’t just about physical symptoms. It’s about the emotional toll of being given hope — and then having it taken away." - Vyvgart clinical trial participants
Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White

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Susannah Fox @susannahrfox.bsky.social · 7d

Caregiving in America: While caregiving is more prevalent among older adults, a full quarter (27%) of 18- to 29-year-olds report providing unpaid care to a friend or loved one. The average age of caregivers in the U.S. is 50.
susannahfox.com/2025/09/25/c...

GenZ are caregivers too: 27% of 18- to 29-year-olds report providing unpaid care to a friend or loved one in the year prior to the survey. Intensity drivers of younger and older caregivers: Caregivers under age 50 are more likely to experience family disagreements, money concerns, worrying that it is all too much, and feeling stressed out or depressed. Older caregivers are more likely to say they are confident navigating money and benefits for others. - ARCHANGELS

Reposted by Susannah Fox

Jaime Garcia Iglesias @jgarciaiglesias.bsky.social · Sep 10

What an honour to have our book on HIV and COVID nominated for the Foundation of Sociology of Health and Illness with such amazing books including the fab Selling Immunity!

@bsa-medsoc.bsky.social @nagingtonuom.bsky.social

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Susannah Fox @susannahrfox.bsky.social · Sep 5

Peer support is powerful: "We were talking about, “What’s the thing that’s keeping you up at night right now?”

By us saying them, it allowed for (others to say), “Yeah, I’m dealing with that too.” Then you can collaborate on it."
www.nytimes.com/athletic/659...

www.nytimes.com

Susannah Fox @susannahrfox.bsky.social · Aug 30

🌻

Sunflower just starting to bloom. Spiky green leaves cover most of the disk. Five yellow petals are unflolded

Sunflower half open, with a half circle of florets visible on the center disk

Sunflower almost fully in bloom. Three yellow petals are still folded over the brown disk of florets

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Susannah Fox @susannahrfox.bsky.social · Aug 29

At the recent Moebius Syndrome Foundation conference, Kathleen Bogart, PhD, led a discussion about ableism and asked, "How would our world be different if everyone had Moebius?"

A child spoke up first: "People would be kinder to each other." susannahfox.com/2025/08/29/w...

Mental Health Tech Isn’t Reaching Rural Youth

Susannah Fox @susannahrfox.bsky.social · Aug 21

Mental Health Tech Isn’t Reaching Rural Youth, by Ben Miller open.substack.com/pub/mentalhe...

The tools are there. Access, trust, and relevance may not be.

open.substack.com

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Susannah Fox @susannahrfox.bsky.social · Aug 19

Update 🌻

Orange petals surround a brown disk of florets on a sunflower that has grown over six feet tall

Jill Dopf Viles, DIY scientist

Susannah Fox @susannahrfox.bsky.social · Aug 16

I LOVED this book - a medical mystery solved by the patient herself. Find out more, order your copy: www.bloomsbury.com/us/manufactu...

Book cover for Manufacturing My Miracle: One Woman's Quest to Create her Personalized Gene Therapy, by Jill Dopf Viles. Ilustrated by a red and blue double helix. In the center is a picture of the author as a young girl

Susannah Fox @susannahrfox.bsky.social · Aug 16

Jill Dopf Viles died one month before her book, MANUFACTURING MY MIRACLE, was released so I'm doing what I can to lift up her incredible story susannahfox.com/2025/08/15/j...

Susannah Fox @susannahrfox.bsky.social · Aug 16

Thank you! I love finding new examples of patient-led ingenuity - so happy you found my book useful 💛💙

Susannah Fox @susannahrfox.bsky.social · Aug 16

Update

Large sunflower with yellow petals and a brown disk - half open, with spiky green leaves folded over the top

Susannah Fox @susannahrfox.bsky.social · Aug 15

Velvet Queen sunflower

Orange petals surround a brown disk, two bees harvesting the pollen

Susannah Fox @susannahrfox.bsky.social · Aug 15

Potential, cracking open

Sunflower bud starting to open, spiky green leaves surround yellow petals

From Patient to Pioneer: Frans Frielink’s Journey with Alpha-1 MZ - Global Liver Institute

Susannah Fox @susannahrfox.bsky.social · Aug 7

What do you do when clinicians dismiss your concerns? Frans Frielink dug into the medical literature, talked with other patients, and made the connections nobody else saw. Great #RebelHealth story: globalliver.org/from-patient...

My name is Frans Frielink, and I have over 40 years of experience in the semiconductor market in research and business. My background is deeply rooted in analytical thinking, problem-solving, and tran...

globalliver.org

Reposted by Susannah Fox

Joyce Lee MD, MPH @joyclee.bsky.social · Jul 15

AI Stepped In Where the System Stepped Out substack.com/inbox/post/1...

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Susannah Fox @susannahrfox.bsky.social · Jul 11

Diabetes by Design

Susannah Fox @susannahrfox.bsky.social · Jul 11

"One of the biggest challenges is that not only are you learning to keep yourself alive, but you are also having to educate everyone around you" - Alex Durussel-Baker of Diabetes by Design. To combat misinformation, she started subverting famous designs to trick people into learning about diabetes.

3 posters are pasted on a wall above 3 folding chairs. Poster one reads "Type 1 Diabetes" and is in the style of a Beatles album cover. Poster two reads "Rage Bolus" and features a fist holding an insulin pen. Poster three is a stylized portrait of a man with the word "Insulin" under his image.

Type 1 Diabetes Companion Cards

Susannah Fox @susannahrfox.bsky.social · Jul 10

So excited to see these beautiful, useful resources in the world! I just backed Type 1 Diabetes Companion Cards on @kickstarter.com www.kickstarter.com/projects/884...

Eye catching card-based toolkits to help navigate the highs and lows of living with type 1 diabetes.

www.kickstarter.com

Susannah Fox @susannahrfox.bsky.social · Jul 8

Thank you! End the Legacy is on my list - scroooollll down. Right now the list is alphabetical but I’d love suggestions on how to make it more useful