National Keratoconus Foundation

05/21/2025

Once a life-altering diagnosis, keratoconus is now met with effective treatments like corneal cross-linking, thanks to decades of global collaboration. 🙌 This transformation—highlighted in a recent article—shows how far we've come in restoring and preserving vision. 👁️

From cutting-edge research to compassionate care, this journey is a powerful reminder of what’s possible when the medical community works together. 💡

🔗 Read more: healio.com/news/ophthalmology/20250520/keratoconus-treatment-a-modernday-miracle-through-decades-of-collaboration

05/06/2025

A new study published in The American Journal of Ophthalmology has uncovered troubling disparities in how patients with keratoconus (KCN) receive treatment—revealing that race, gender, insurance status, and even neighborhood play a role in who gets access to procedures like corneal cross-linking (CXL) or corneal transplant. 👁️

Read the full article here:
https://nkcf.org/who-gets-treated-for-keratoconus-a-new-study-uncovers-inequities-in-care/

04/29/2025

We had the pleasure of speaking with keratoconus expert Dr. Kendall Donaldson MD, MS, Professor of Clinical Ophthalmology at Bascom Palmer Eye Institute University of Miami Miller School of Medicine. She shares her advice for keratoconus patients and what changes she hopes to see in the future to make diagnosing and treating KC easier. 👩🏼‍⚕️👁️ Visit https://nkcf.org/expert-interview-kendall-donaldson-md-ms/ to read more!

04/21/2025

Tomorrow, April 22nd, is UCI Giving Day. NKCF is proud to be housed at UCI. Together, we will improve the lives of those affected by keratoconus. 👁️

100% of your gift to the UCI Foundation supports the programs of the National Keratoconus Foundation. All gifts received by the UCI Foundation for NKCF are used exclusively to further our mission to increase public awareness, promote research efforts into the causes and treatments for keratoconus, and offer encouragement and support to those living with this condition.

Donate here: https://nkcf.org/donations/

04/18/2025

Episode 34: Rethinking Rare: Raising Awareness and Rewriting the Keratoconus Narrative 🎧

In this episode of Clearly KC, Dr. Melissa Barnett sits down with Dr. Jennifer Harthan to discuss a groundbreaking pediatric study revealing a higher-than-expected prevalence of keratoconus in children. They explore the implications for early diagnosis, patient education, and specialty lens care. Tune in to learn why raising awareness and strengthening care pathways—especially in underserved communities—is more important than ever.

Listen on the Podbean app, Spotify, or Apple Podcasts.

04/08/2025

Below is an excerpt of John's journey with KC, written by John’s dad, Mark:

“We do not know when John started developing KC. John did not complain about problems with his eyesight. That is not to say that he did not have problems seeing.

The challenge is particular to people with different abilities. They are always adapting. They are always finding a way to make do. Therefore, they are less likely to identify a problem because they are working around it. 
 
We were fortunate because an astute teacher recognized that John struggled to see writing on the blackboard and certain signs and images. We also grew concerned at home as we noticed John squinting to focus his eyes. 
 
We took John to see an ophthalmologist. They said John might have an astigmatism and suggested John sit closer to the blackboard and he prescribed glasses with mild corrective lenses. 
 
The problem persisted. We needed a second opinion.
 
We took John to see a second ophthalmologist, who diagnosed his KC. That doctor gave John a prescription for thick, hard contact lenses that might help with his vision and would hopefully slow the degeneration of his eyes. 

The contacts could slow down, but not halt the degeneration. John needed a longer-term solution. The second ophthalmologist declared that John would not be a good candidate for the additional interventions, including corneal cross-linking (CXL), and would not be receptive to a cornea transplant because of his Down syndrome.  
 
We eventually found Dr. Ostrovsky, who gave John the most thorough eye exam he had ever received. She confirmed the diagnosis of KC. She was angry that his previous doctor had said John was not a candidate for certain interventions. She could see his responsiveness, competence, and level of responsibility. 

Unfortunately, the condition had degenerated John's eyes so that she could only be treated in the right eye. The missed diagnosis and erroneous treatment had cost John. 

John underwent a successful CXL treatment. If it does worsen, John will need to undergo a cornea transplant.

John remains optimistic, and we continue to seek the best outcome in treating his KC."

04/04/2025

At NKCF, we hear stories every week from patients who credit their doctors with not only preserving their sight, but also with restoring their confidence and hope. Whether it’s an optometrist who spent hours fitting a scleral lens or a corneal surgeon who helped navigate the decision to undergo cross-linking, these clinicians make a lasting impact on the lives of those they serve.
We believe it's time to shine a light on these heroes. 👩‍⚕️👁️👨‍⚕️

That’s why NKCF is now accepting nominations for our 2025 Keratoconus Doctor of the Year award. This is your opportunity to help us recognize the extraordinary care being delivered by doctors across the country. If you or someone you love has been positively impacted by a doctor who treats keratoconus, we want to hear about it. We also encourage clinicians to nominate their peers—whether it’s a colleague you comanage patients with or a researcher whose work is advancing the field—this is your chance to spotlight those making a difference in keratoconus.

Nominating a doctor is simple. Just fill out our short online form to tell us why your KC doctor deserves to be recognized. You can nominate as a patient, a caregiver, a fellow clinician, or an industry partner who’s witnessed outstanding KC care.
Together, let’s celebrate the individuals whose passion and dedication help improve vision—and lives—for people with keratoconus every day.

🗳️ Vote here: https://nkcf.org/kc-doc-of-the-year/

03/12/2025

Dear NKCF Community,

It is with immense gratitude and excitement that I introduce myself as the new Director of the National Keratoconus Foundation. As I step into this role, I am inspired by the extraordinary power of our community – patients, clinicians, industry and donors – working together to make a difference.

Together, we have the power to increase awareness and understanding of keratoconus, empower earlier diagnoses and proactive treatments, and drive groundbreaking research into the causes and management of this condition. Through our foundation, your stories, and updates, I hope you’ll find inspiration, connection and ways to contribute to our mission.

I encourage you to share our resources with friends, family and colleagues. Let’s grow this network of hope and action. If you’re inspired to get involved or have ideas to share, I urge you to reach out and respond to the many opportunities you’ll see highlighted each month. Together, we can achieve more than we ever imagined.

Your support – whether in time, expertise, or donations – fuels this foundation. Every contribution matters. Thank you for your continued engagement. I look forward to connecting with you.

Yours in progress and partnership,

Amy Hellem, PhD, FAAO

Director, National Keratoconus Foundation

03/10/2025

02/05/2025

February is Low Vision Awareness Month. Low vision is a term used to describe a level of vision impairment that can't be fully corrected with standard glasses, contact lenses, medication, or surgery. Unlike complete blindness, people with low vision still have some useful sight, but it may be significantly limited. The condition can affect one or both eyes and varies greatly from person to person.

As keratoconus progresses to the point where traditional treatments no longer provide satisfactory results, it may lead to low vision. Regular eye exams help to monitor disease progression and provide early intervention to preserve vision.

01/27/2025

The Angel Eyes Foundation: A Vision of Hope for Keratoconus Patients

The unfortunate truth is that living with keratoconus comes with a cost - frequent eye doctor’s visits, expensive contact lenses, and possible surgeries to stabilize vision. These are life-changing necessities, but costly endeavors, even with vision and medical insurance. Ashley Worth, saw this problem and barrier first hand as a keratoconus patient herself and started The Angel Eyes Foundation to help alleviate the some of the financial burden of other individuals with keratoconus.

Worth shared with us a bit about her incredible organization. Visit https://nkcf.org/the-angel-eyes-foundation-a-vision-of-hope-for-keratoconus-patients/ to read more.

01/22/2025

Share your story about living with keratoconus with the National Keratoconus Foundation. ✍️👁️

What has your experience been like, how has it affected your life, and what are some helpful tips that you have learned along the way?
We may share your story on our website or social media.

Visit https://nkcf.org/our-stories/ to share your story.