2020

Donations: ~$20K (mostly from individual donors)

Donor Highlight: The Twelve Days of Christmas

On December 14, 2020, we received an online donation of $2.00 from someone who had previously donated at a couple of critical times. We scratched our heads a bit. Was he just testing out the online donation page to see if it worked? The next day, we received $4.00 from the same donor. The third day, $8.00, and I’m sure you know by now where this was going! Yes, this went on for the full twelve days in Christmas and totaled $8,190! It takes such a special kind of person to go to that kind of trouble for us, not just the generosity but the effort to make it fun and feel so good in the midst of a challenging year like this. There are just no words. Well, actually, code words Camel Spit. We’ll find a rainy day to explain that.

Dry Eye Disease and Me Community Survey Results: >400 Submissions.

We closed our survey to new submissions in early 2021. The data and stories gathered in this process are astonishing and we look forward to sharing the results with you.

Helpline: >400 clients served

The Dry Eye Helpline is an 800 number for people struggling with the impact of dry eye disease. The intent is to provide orientation, support, information and coaching to help people navigate challenges and find appropriate resources.

NEW: Dry Eye Happy Hour

Dry Eye Happy Hour began in July 2020 as a biweekly webinar-style Zoom meeting with volunteers forming panels for discussion of topics, and also to share our stories and discuss the strategies and solutions that are working for us.

Support groups

Our Facebook groups are continuing to grow. Dry Eye Talk has about 5,500 members, and My Big Fat Scleral Lens has 4,500. Our original forum is actually growing very rapidly now too. Staffing these is one of our biggest areas of need for 2021 - we need moderators for the groups and forums to help keep things safe, to welcome and moderate new users, and to make commonly needed information and answers readily accessible. 

Dry Eye Stories

New stories are being added steadily to dryeyestories.com - we now have about thirty. These stories are an important part of the panoply to help people feel connected and know that none of us is on this journey alone! 

Conferences and “behind the scenes” work

Rebecca and Aidan attended GSLS (“Global Specialty Lens Symposium”) in January 2020. It was a great place to cement existing relationships and forge new ones and most of all to begin new partnership projects on behalf of scleral lens users. In February, Rebecca attended “Dry Eye University”, a weekend course in Denver, to get a clearer understanding of the ways in which dry eye is becoming a profit center in ophthalmology and optometry.

Throughout the year, Rebecca engaged in both new research projects in academia and numerous meetings organized by key industry players, where we are finding new ways to get our voices and needs heard. These ranged from helping create teaching materials for physicians, to participating in roundtables for patients and patient advocates. She was also a guest speaker on two podcasts, one for optometrists and another for ophthalmologists.

2019: refining the vision, starting the projects

There is far more to tell from 2019 than could ever be put to paper. The months and months that we spent working out the details of our community survey - so many re-thinks, so many re-writes, so many re-organizations, all the while working out a framework for our community’s experience of dry eye. The long conversations about the role of conversations themselves in identifying and validating issues and creating change. The months of talking through what it would mean and take to run a helpline, and the processes we worked out. The long writing sessions creating concepts about a framework for understanding dry eye patients that we can present to the medical world. And so much more.

It was an amazing year, rich and productive in think-tank terms and starting to lay some groundwork for the future.

2018, redux: going nonprofit

The time came, and we took the plunge - incorporating and filing with the IRS for tax exempt status as a 501(c)(3). We received our IRS determination letter on February 28, 2019, retroactive to October 25, 2018.

2018: dry eye stories

Dry Eye Stories is Aidan’s brainchild and it is all about sharing the lived experiences of people with their own individual version of this thing so commonly misnamed Dry Eye Disease. It is not a large, ambitious project. Rather, like everything meaningful we’ve ever done, it is growing slowly and organically. But it’s powerful.

Stories of people with dry eye are everywhere, in a sense. There are many Facebook groups and online groups of various sorts where people are constantly sharing. Yet social media story sharing is focused on the current moment: Where am I right now and what do I need and what am I struggling with?

The purpose of Dry Eye Stories is more reflective. Most of the stories are submitted by people who have, in some way or another, come out the other side. Not that they are cured, but that they have struggled, and have made peace. They have found a path forward, whether it is centered on remedies for symptoms, or on strategies for managing daily impact, or on a mental health journey, or on all of these and more.

Stories are essential for those who are in the hard parts of the struggle. Because we all need hope. We need to know that it can get better. Most importantly, each of us needs to know that it can get better for someone like ourselves, so we seek and find some kind of common ground in others’ stories.

2017-18: researching patient priorities

Working with epidemiologist Ian Saldanha (then at Johns Hopkins, now at Brown University) on research to document dry eye patient priorities for dry eye research was an exciting highlight of this particular period. Ian had previously published research based on surveying eye doctors about their priorities for dry eye research (Gaps in Current Knowledge and Priorities for Future Research in Dry Eye, Cornea, December 2017) and decided that it would be interesting to ask patients the same questions. Thanks to the research team’s excellent work and our community participation, we were able to get the patient-driven counterpart study published in a high-impact journal (Research Questions and Outcomes Prioritized by Patients With Dry Eye, JAMA Ophthalmology, October 2018) which was especially exciting in light of the fact that patients’ priorities were completely different from doctors’ priorities. Doctors want our disease to improve from a clinically measurable standpoint. We patients want our symptoms to improve so our lives will be better. Perhaps it seems obvious - but nobody every documented this dramatic difference in perspective before.

Of the 10 most important outcomes, 9 were associated with symptoms or quality of life. The 3 outcomes rated most important by patients were ocular burning or stinging, ocular discomfort, and ocular pain.

2015-2017: TFOS DEWS II

Representing the patient community on a TFOS DEWS II subcommittee was an honor and a richly educational experience, and led to many wonderful relationships with some of the top dry eye researchers in the world. - Rebecca

2007-2015: One conversation after another

There are no impressive, documented achievements to tout from this era. Yet it was a richly productive era that I would not trade for anything. I spent all these years simply spending time with people on the phone, hearing their stories, listening to their experiences and struggles and to what was, and wasn’t helping; fostering our online DryEyeZone community; researching to find more and better information; forging relationships with doctors; studying all new relevant medical studies; attending medical conferences when able; keeping up on clinical trials of new drugs and devices, absorbing everything that could in any way equip me better for the next conversation. Slow and organic. - Rebecca

2006: A unique dry eye conference

In 2006 we held a mini (think, very small!) conference for people with dry eye. It was a unique event and very exciting. The speakers were a mix of patients and doctors, each experts on their topic, ranging from the experience of dry eye pain and how it impacts your life, to how to successfully navigate an appointment with a specialist. We hope someday to do this sort of thing again, even if only virtually. - Rebecca

2005: The Dry Eye Zone

If you’d like to read about the earliest beginnings, see The Dry Eye Zone Story at Dry Eye Talk forums.