2020 in Hindsight

The never-ending year that was gone in a flash!

2020 was a year of shifting gears, re-evaluating, re-prioritizing and most of all scrambling to make time for projects. We have no paid staff, so in a year with so much inevitable disruption to our “day jobs” and lives, it was interesting to find ourselves (thanks to the generosity of donors!) in greater need of time than money as the year drew to a close.

With that context, it’s exciting to look back and see the steady progress that was made in 2020 to bring better quality of life to our community, including some shifts and innovations prompted by the pandemic. In no particular order, here are some highlights:

The never-ending year that was gone in a flash! 2020 was a year of shifting gears, re-evaluating, re-prioritizing and most of all scrambling to make time for projects. We have no paid staff, so in a year with so much inevitable disruption to our “day jobs” and lives, it was interesting to find ourselves (thanks to the generosity of donors!) in greater need of time than money as the year drew to a close.

With that context, it’s exciting to look back and see the steady progress that was made in 2020 to bring better quality of life to our community, including some shifts and innovations prompted by the pandemic. In no particular order, here are some highlights:

DRY EYE DISEASE AND ME COMMUNITY SURVEY: >400 SUBMISSIONS.

This project is a key long-term investment in our community’s future, where we are documenting our community’s experiences in great detail. The information gathered will be put to many uses, both within our community, to help us understand our experiences better and understand the extent which all aspects of our dry eye journeys really are shared experiences, and outside our community, to educate the doctors, employers, insurers, researchers and regulators (to name a few) about our needs, and to identify specific areas where more patient-centric research is needed.

In our recent board meeting, we decided to bring this survey to a close on February 28, 2021. We are very excited about sharing our community findings with you as we begin analyzing the data, and we are so appreciative the time investment you have put in!

DONATIONS: ~$20K

In 2020, we received a total of $19,888.97 donations. All of these donations were from individuals, with the exception of $2,500 from Science Based Health, a company that makes ophthalmic nutraceutical products. $212.87 came in from Amazon Smile, thanks to those of you who made us your Amazon Smile beneficiary organization! An additional $2,329.93 came in from Dry Eye Shop donors who opted to donate during checkout. (Note: Dry Eye Shop is not part of the Dry Eye Foundation, but it acts as a conduit for donations.)

Donor Highlight: The Twelve Days of Christmas

On December 14, 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. I’ll explain some day.

Helpline: >400 clients

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.

Some of you will remember Mary, a career social worker who we had on staff during the end of 2019 and early 2020 as we worked on building protocols and a resource site for our helpline, as the original intention was Mary and I to jointly staff the helpline. Unfortunately, the initial Covid shutdown interrupted both the development and the fundraising process, so we were not able to continue on that path and had to let Mary go. When we circled back in early summer, we decided to stay scaled back for the time being and simply set aside a chunk of my time each week for Helpline calls and to continue developing materials and documentation for the future. 

But… looking back, it turns out we logged more than 400 helpline consultations in 2020! These calls run anywhere from 30 to 90 minutes, plus follow-up and documentation time. So, while we still have a long ways to go in creating protocols and printed materials for our helpline, it was gratifying to see at the end of the year that we were able to help so many people.

A recent and exciting trend is seeing how people are finding us! While we can’t wave any magic wands over problems, we do feel that everyone who comes, receives help of some kind, so the biggest challenge is getting the word out - and we are seeing fruit of those efforts now.

NEW: Dry Eye Happy Hour

In July, we began our new Dry Eye Happy Hour 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. This was an exciting new development that we’ve been very happy about. Initially, it was motivated by concerns about the additional isolation people with dry eye are experiencing due to Covid-19, and as we continued, the feedback is indicating our community really values it as an ongoing platform for support. We finished the year by experimenting with regular Zoom meetings. All twelve sessions that have held are available on our YouTube channel.

After a hiatus for the holidays, we have resumed Dry Eye Happy Hour as a weekly meeting (normally Fridays at 3pm Pacific) with one meeting per month in the webinar style that we started with.

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

Aidan and I attended the GSLS conference in January 2020, which was terrific for cementing existing relationships and forging new ones and most of all beginning new partnership projects aimed at improving the standard of care for educating and supporting new scleral lens users. In February, I attended “Dry Eye University”, a weekend course in Denver, to get a clearer understanding of the extent to which dry eye is becoming a profit center in ophthalmology and optometry.

Throughout the year, I 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. I’ve also participated in podcasts aimed at optometrists and ophthalmologists. The bottom line is that wherever I see an opening to engage industry and doctors about unmet needs in our community, I will embrace that opportunity. There is so much that they need to understand about us!