The beat goes on

When I first entered the clinical research industry 13 years ago, I quickly learned that those that choose (and believe me, it is very much a choice–clinical research isn’t for everyone!) to spend their careers in research tend to fall into one of two buckets. The first is comprised of those that land a gig at a company and, through a series of mergers and acquisitions, spend the next 30 years of their lives at the same parent organization. The second is comprised of those that move around every 18-24 months. While I was drawn to the former, I always found myself in the latter, making moves to satisfy my curiosity and desire to better contribute to reducing the time it takes to bring promising new therapeutics to the patients that need them most.

My career has taken me across the industry and across the world, all the while knowing that it was just a matter of time before I struck out on my own. When I received my initial vision loss diagnosis back in 2019, I was working as a traveling sales guy for an ophthalmic CRO, building strategic partnerships with innovative organizations working to cure blindness and restore vision loss. When I realized how quickly my vision was deteriorating and how rapidly my visual processing issues were progressing, I committed to making a change, getting back to my roots in patient advocacy.

Right off the bat, I understood that I was exceptionally privileged. Privileged to have the option of making a career move. Privileged to be a crusty, old white guy who knows how the clinical development sausage is made. With (failing) eyes wide open, I decided to harness my powers for good, working to help advocates that don’t have a receptive audience find their platform and assisting budding advocates to more effectively tell their stories.

Along the way, I’ve built an incredible network of fellow advocates that have become my dearest friends, confidantes, and teachers. I’ve worked across all phases of research, therapeutic areas, and stages of the journey towards commercialization. Ultimately, I found that what I’m most passionate about is patient focused drug development (PFDD), a framework created by FDA’s Center for Drug Evaluation and Research to ensure unmet needs; quality of life impacts; and patient preferences are better understood and thoughtfully incorporated into the clinical development process.

By better aligning clinical development plans with patients wants and needs, we can dramatically reduce clinical development timelines. By creating meaningful, long-term partnerships with patient communities and advocacy organizations built around trust and authenticity, we can work to make sure that, should these new treatments make it to market, access and reimbursement aren’t insurmountable obstacles.

And that, my friends, brings me to today. I’m so pleased to announce the official launch of Canary Advisors, a boutique consultancy founded by me and co-founder Jenn McNary. At Canary, we work hand in glove with organizations set on patient focused clinical development. We recognize that there’s no one size fits all approach to advocacy. As a  result, our offerings are tailor-made to match the needs of the patient communities our partners serve. We can’t wait to tell you more.

#glaucomaniac #goingblindguy #charlesbonnetalldamnday

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Coming Through!

A very handsome, visually impaired runner wearing a vest that says blind on it

Over the last few years, I’ve spent quite a bit of time thinking about my hobbies, both how I can adapt some of my favorites to meet my needs as a person with rapidly deteriorating eyesight as well as old interests I might want to start pursuing again (see: music) as maximum enjoyment doesn’t require a lot of visual cues. While some of these modifications have been relatively easy (moving from paperbacks to an eReader; starting to listen to more podcasts; etc.), others have been more difficult.

Running has been a big part of my life since 2008 and there are a number of ways to make sure running remains in the cards moving forward. There are sighted running guides (hi, Nina!); tethers; treadmills; and, when outside, there’s always the option of sticking with tried and true routes that I know well. I’m religious about running against traffic so motorists and fellow pedestrians can see me coming and I’m more alert than ever, constantly scanning from side to side to make use of the vision I do have. More recently, I started running with a high visibility safety vest that says “blind” on the front and back. The vest is more for others than it is for me with the idea being to put people on notice so that they can give me a wide berth. While reactions have not been quite as expected, the vest has also sparked some strange dialogue.

Recently, I was waiting for a group run to kickoff with my run club, Bull City Beer Runners, when I was approached by a young woman who was more than a little flustered. “Sir? Sir? My friends wanted to know why you’re wearing that vest but were too embarrassed to ask you. So, I’m doing it.” It never occurred to the group that the guy wearing the vest that says “blind” might, in fact, be blind, something that has come up a few times now. Ignoring the fact that Sir is my father’s name, I explained that I’ve lost quite a bit of vision and also have difficulty processing the images my eyes take in. The vest is no joke.

Fast forward to yesterday when I was going for a run in the neighborhood with my lovely, sighted guide. We passed a neighbor walking her dogs. She laughed. “Blind today I see?” I responded, ‘Yep. Blind everyday, in fact.’ We continued on our way.

When many think of the blind and visually impaired, minds often drift to white canes. This in spite of the fact that only 2%-8% actually use canes. What about braille? As you know from a previous post, <10% of those that are legally blind in the US even read braille. Once again, expectations don’t often match reality. There are blind long jumpers, mountain climbers, swimmers, UX researchers (hi, Eugene!), and innovators. Remember, appearances can be deceiving.

#glaucomaniac #goingblindguy

The Return of Chuck Bonnet

This is Charles Bonnet, the namesake behind my strange hallucinations.
Charles Bonnet was a Swiss philosopher and naturalist who studied the visual hallucinations his grandfather was experiencing. The disease eventually came to be named after Bonnet.

13 months ago, I wrote a piece about the visual hallucinations I experience as a result of my progressive vision loss. While I wasn’t exactly sure what was going on at the time, I had a hunch that my visions were caused by Charles Bonnet syndrome (CBS).

The hallucinations caused by CBS are a very normal result of failing eyesight and the brain’s inability to compensate. These visions take two main forms: 1) simple hallucinations of repeated patterns and shapes; and 2) complex hallucinations like dragons; faceless people; animals; objects; and landscapes. Visions can appear for seemingly no reason at all and may last minutes or hours. A recent paper indicates that 7.1% of patients with open angle glaucoma may experience CBS and it’s believed that 100,000+ individuals are living with CBS in the UK. 

When I broached the topic with my glaucoma specialist, her eyes got as big as saucers and she blurted out, “Shit! I’ve only met 2 patients in my career that have Charles Bonnet and they’re both blind. I mean…b-l-i-n-d. They can’t see a thing!” While I appreciated the salty language, desire to keep it real, and know my doc wasn’t trying to downplay what I was telling her or belittle me in some way, I had to explain how this comment could easily be misconstrued by a patient experiencing these strange and unsettling symptoms.

CBS is a condition, I suspect, that is taught in med school and often unnoticed in clinical practice. There’s little patient-facing education about the disease and many wrongly assume that their visual hallucinations are linked to mental health disorders or dementia and suffer unnecessarily as a result.

While writing this piece, I was thrilled to learn about Esme’s Umbrella, an organization working to build greater awareness of Charles Bonnet syndrome and create a network of support. Be sure to check them out. Oh, and if you’re interested in hearing directly from patients about their experiences with Charles Bonnet syndrome, you can either ask me about the time I saw my wife wearing Groucho Marx glasses and nose putty or check out this video from the Royal National Institute of Blind People.

#glaucomaniac #goingblindguy

Deal with it

You know that Stevie Wonder GIF with the floating glasses and blinking braille? This is that.
I’ve been a big fan of this sassy, Stevie Wonder GIF for years. It wasn’t until I started to learn braille that I realized it says “deal with it” at the bottom. Thanks to Stevie for the inspiration.

Happy New Year, everyone, and I hope 2022 is treating you well…or at least as well as can be expected as we enter year three of the pandemic.

January is Glaucoma Awareness Month which means this is a friendly reminder to get your eyes checked for symptom-free vision loss. In the US, 3+ million people have glaucoma and the National Eye Institute believes this number will jump to 4.2 million by 2030. Glaucoma is insidious as there are few obvious symptoms. Once vision is lost, it’s gone for good or at least until the Catalyst for a Cure team’s vision restoration work pays dividends.

With my vision getting worse and faced with some unexpected free time, at the end of 2021 I decided to try my hand braille. My mom’s been bugging me to give it a go for a few years now (thanks, Mom!) but I had never really felt the need. Fewer than 10% of those that are legally blind in the United States read braille and roughly the same percentage of blind children learn it. These numbers have been steadily shrinking over the last few decades and a big reason for it is smartphones. Why read braille when your iPhone has best in class accessibility technology built in that will read the screen to you or transform your words into print? At the grocery sure and not sure if you’re looking at a can of refried beans of creamed corn? There’s an app for that.

I’ll tell you why I decided to give braille a go. Ol’ Blindy here likes to travel and, were it not for the pandemic, would be gearing up to visit San Francisco for Glaucoma 360, one of my favorite meetings of the year. It’s a wonderful opportunity to catch up with my friends at the Glaucoma Research Foundation and spend time with my wife in one of our favorite places. When Nina’s had enough of me or I find myself running alone, braille comes in handy. Look at the floor numbers next time you’re in an elevator. Can’t read ’em? Braille. Once you get off that elevator (hopefully on the right floor), you might want to be able to confirm you’re jiggling the proper door handle. Unsure? Hotel room numbers tend to have braille on ’em, too.

So, in honor of Glaucoma Awareness Month, I say “If you can’t beat ’em, join ’em.” Go ahead and try braille. With a little bit of practice, you too will be able to navigate elevators and enjoy braille memes like the one above.

#glaucomaniac

Spooky Stories Like the One About the Guy Who Didn’t See Well at Night

Halloween always makes me think of the book Scary Stories to Tell in the Dark.

Can you believe it’s been over a year since Spooky Tales From the Glaucoma Clinic? Time flies when you’re…something something global pandemic. Now, onto today’s topic.

According to family lore,  I always saw things in black and white when I was young. There were never any shades of gray. Right or  wrong, yes or no, there was or there wasn’t. As I’ve gotten older, I’ve embraced the gray in some ways though I still prefer clear cut answers to the murky, unsettled in-between. Despite preferences, I’m writing to you today from that hazy, unclear place.


Back in November 2020, I found myself careening towards legal blindness. Since that time, I’ve stopped driving almost all together, phased out my beloved night runs, and generally tried to open myself to the idea that, sometimes, I’m just going to need help making things work.


Speaking of work, let’s talk about that. Statistics vary a bit depending on your source but work is a problem for the blind and visually impaired. Roughly 70% are unemployed. Though I’m no expert, my understanding is that the Feds pay benefits to the blind through two social services programs: Social Security Disability Insurance and Supplemental Security Income. Applicants may qualify for benefits if vision is no greater than 20/200 in the better eye or you have a visual field less than 20 degrees in your better eye for an anticipated time lasting longer than 12 months. While exceeding the threshold for legal blindness wouldn’t have changed my driving, running, or work decisions, it would have meant that I’d have the paperwork necessary to qualify for disability should I no longer be able to perform my job with reasonable accommodations.


For the last 12 months, my visual fields have remained relatively stable while my visual function seems to have decreased considerably. In many instances, I no longer recognize friends until they’re right on top of me (hi, Ashley!). Nina instinctively reads the subtitles to me because she knows I can’t anymore. Though I’m a little embarrassed to admit it (please don’t tell them), I think I even confused my dogs the other day. The loss of visual function is frustrating enough but what gets me even more is the fact that it’s not accurately reflected in my clinical examination. 

Gloria and Rose are two beautiful pitbulls


While the cause of this phenomenon might be interesting, I haven’t really dug in as I guess it doesn’t matter much in the end. Still, I wish there were a clear explanation I could point to when telling my doc about what I’m experiencing. Until then, greetings from the murky, unsettled in-between.

#glaucomaniac

That’s. Just. How. It. Is. Now.

In my most recent blog post, I touched on the kickass network of patients and advocates I’ve been fortunate enough to tap into in recent years. One of them, Tucker Dupree (hey, buddy!) was kind enough to turn me onto Eone, a company making watches for the blind inspired by the story of Brad Snyder, a world class, visually impaired Paralympic swimmer with a hell of a story. After buying myself a timepiece (thanks again, Tucker!), I ordered Brad’s book, Fire in my Eyes. In the book’s afterword, he talks about a concept he refers to as “the delta,” that is, the delta between how life used to be and how it is now. In his experience, the more he focuses on the gap between the two, the more frustrated he gets.

Brad describes his first experience washing the dishes after going blind. 


“I had to very carefully feel my way through several precariously arranged stacks of dirty plates, and then load them into an equally disorganized dishwasher before hand-washing the delicate items. The delicates then needed to be loaded onto a dish rack that may or may not already have contained other glasses, plates, or bowls somewhere on the edge. Much like disabling an IED, one false move during this process would result in an explosion, only this time made of ceramics and glass.


After I screwed up, my mess became a hundred times more difficult to clean, and much more dangerous since little shards of glass were everywhere. Not only were my feet at risk, but what about poor Gizzy (@bradsnyderusa’s dog) who immediately came running into the kitchen to see if I was okay?”


My friends, I feel this. I feel it in my friggin’ bones. The last few weeks, I’ve found myself increasingly frustrated with the delta between the results when I used to sweep floors and the results achieved when I sweep them now. And it’s not like I’m a neat freak. I just sincerely enjoy clean, grime free floors which is difficult when you live in a two pitbull household and your wife moves through life like the Tasmanian Devil. Back to the floors, though. The results look the same to me but I’m told they are less stellar than they once were. When I’m done, my wife, Nina, usually has to retrace my steps with a dustpan in hand. 


I didn’t notice this at first. But when I finally realized what was going on, I was understandably disappointed with myself. Through no fault of her own, I felt like I was saddling Nina with the responsibility of cleaning the hardwoods and carpets, something that was traditionally on my chore list, on top of all the other crap she does around the house. 

In his book, Brad notes that, “After identifying ‘the delta’, my entire perspective began to change. So what if it now took me a while to order dog food or pay the electric bill by phone? That’s just how it is now, I thought, and there is no sense in comparing it to anything else.”


That’s. Just. How. It. Is. Now. I used to excel at cleaning the floors. I was recently told I was never much of a driver but at least I could get myself from point A to point B in one piece. Things change and you adapt. Now, I have the opportunity to learn new skills (am gratefully accepting pointers) like how to sweep without the aid of my eyesight or how to use accessibility features on my iPhone to call an Uber if I need a ride somewhere.


The delta reminds me of the concept of love versus attachment as described by Ven. Thubten Chodron in her book, Open Heart, Clear Mind. If you really love something (say, the ability to see), and you suddenly find that it’s no longer a part of your life, you learn if you sincerely loved or were seriously attached real quick. Both are fine to a degree but the former will get you much further in life than the latter. While I’m a big fan of seeing (you could say I stan it), whether I retain any of my sight isn’t something I’m able to control so why get worked up over what once was? I’m thankful for all the beautiful things I’ve seen over the years (hi again, Nina) and eager to experience all the smells, sounds, tastes, and touches to come.

#glaucomaniac

Charles Bonnet, You Magnificent Bastard

Different forms of vision loss present differently. Cataracts are kind of blurry. Macular degeneration looks smeared. Patients with glaucoma often lose their side vision first. Charles Bonnet? You see a lot of things that don't exist.

Sick mashup courtesy of https://www.asrs.org/patients/retinal-diseases/38/charles-bonnet-syndrome%20and%20https://courses.lumenlearning.com/suny-lifespandevelopment/chapter/sensory-changes-in-late-adulthood/

It’s been several months since my last blog post but, rest assured, I’ve been keeping busy. My first two articles in a series about the patient perspective have gone live through a collaboration with the good people at Glaucoma Today. The first one, Visiting the Glaucoma Clinic in the Time of COVID-19, came out in January/February and is accompanied by audio. The second piece, Working With Industry on R&D, was published just the other week. In other exciting news, in April I had the pleasure of joining panels at the virtual Patients as Partners and Clinical Research as a Care Option (CRAACO) conferences. Lastly, as a consequence of the speed of my vision loss, I decided to accelerate my transition to full-time advocacy work which began last month. Can you believe that I’m fortunate enough to get paid to educate about the importance of incorporating the patient perspective?

In other exciting news, I’ve somehow managed to plug into a tremendous network of ophthalmology patients and advocates from across the spectrum and across the world. Patients with retinopathy of prematurity (ROP) from South America and Europe; Leber’s Hereditary Optic Neuropathy patients from the East and West Coast; Retinitis pigmentosa patients from a few different geographies; as well as adult onset Stargardt disease patients in my own backyard. Dare I say it? Though we all have differing perspectives, the experience has been…eye-opening.

For starters, I realized that I very easily could have been an ROP patient as the conditions primarily impacts preemies weighing <2.75lbs and born at <31 weeks. Next, I’ve had a few interesting group conversations with those born blind and those who lost their vision later in life. Those born without vision have often argued that they imagine it to be easier to be born this way than to be born sighted and progressively lose your vision. Though I can’t be sure, I tend to think this would be true in most cases. Finally, I’ve had a few people ask what the hardest part of vision loss has been for me and they’ve all expressed a sense of terror and dread when I explain that the most challenging feature has been the fact that I can no longer trust what my eyes (and brain) are telling me. Historical markers that don’t exist on fence posts and all that.

Whether what I’m experiencing is a form of Charles Bonnet syndrome, a phenomenon characterized by visual hallucinations triggered by significant vision loss, or just a mysterious quirk of my rare disease is anyone’s guess. Irrespective of cause, it has, however, gotten me to change by behavior. I’m probably driving 90% less than I used to. When I’m in the passenger seat, I have to fight the urge to tell the driver that I’ve checked both ways and our path is clear. If I’m running with a buddy, I have to remind myself to trust their eyes and not my own. These have been some pretty big changes. While I definitely have more good days than bad, I think it’s important to acknowledge how challenging such a visual metamorphosis can be. I was recently reminding a fellow patient that it’s okay to not feel okay. I realized that the reminder was probably good for me, as well.


#glaucomaniac

RIP, my vision, and also a quick sendoff to that non-existent historical fence

Just before Thanksgiving, my wife (hi, Nina!) and I bought a house in our favorite mountain town in Western North Carolina (WNC). We fell in love with Sylva, NC back in 2012 when I completed my first half marathon after 3.5 years of rehab from tearing my IT band during the Philadelphia Half-Marathon. Though I don’t remember how we came across the Valley of the Lilies Half-Marathon and 5k, I do know that after our first visit to Sylva, we were hooked. Admittedly, I convinced my wife to make the four hour trip to WNC by pairing the race with a visit to the Qualla Boundary to pan for gold and a trip to Dollywood (right across the border in Tennessee), two of her self-professed weaknesses.

Once COVID hit, we made the decision that we weren’t going to be traveling for the foreseeable future. When we come out the other side of the pandemic, there will be two airlines left; flights to Europe will cost $7,000; and you’ll probably need to pay for your mandatory inflight flogging. It won’t be pretty and we’re not interested. We were also getting frustrated with $100/night rentals in the mountains that transformed into $250/night when you take cleaning fees and pet fees into consideration. I fully admit this is a completely bougie, first world problem. Anyway, all that to say, we were ready to buy our little slice of heaven in the almost-Smokies when this place fell into our laps.

My wife traveled to WNC several times over the summer and fall while I stayed home to take care of the dogs. Rosie was still going through heartworm treatment (crate and sedate) and no one was thrilled at the prospect of me driving nearly 300 miles each way with my…questionable vision.

Oh, look! Two beautiful pitbulls! Rosie is the grey and white monster with the short snout. Gloria is the black and white, snouty demon.
Rosie is the silver house hippo up top. Gloria is the fantastic couch cow below.

Several days prior to move in, I learned that I’ve now lost 45% of my vision, a pretty substantial decline from the 15-20% vision loss I was experiencing at this time last year. 

We traveled to the mountains and tried our best to take advantage of everything Sylva had to offer from a masked and socially responsible distance. That largely entailed nesting (read: assembling furniture) and running to blow off some steam. I was especially excited to learn about a fantastic 5k loop that runs in back of our house. 

One morning, I decided I was going to go for a run while Nina went for a walk with Gloria, one of our dogs. Sylva is far enough west that it’s Daniel Boone country and I found myself intrigued by the pioneer-style fences. When I completed my first lap and met Nina and Gloria halfway through lap two, I mentioned an historical marker on one of these fences. Nina was a good sport, like always, and asked that I point it out when the fence came back around on my second lap. When we came back around to the fence, I was excited to point out the historical marker but it was nowhere to be found. “Maybe it…fell over?” I knew Nina was humoring me but agreed that stranger things have happened. Later in the week, I re-ran my route, multiple times, partially because the route is beautiful and partially because I wanted to find that friggin’ plaque.

Ah, yes, the fence that made me first realize I often see things that aren't really there. Its wild when your brain fills in blanks and isn't quite right.
Fence in question

One month later, I can still describe the historical marker clear as day—font, color, size, shape, etc. But the thing is, it doesn’t exist. My brain put it there because I expected it to be there.

It created one based on context and filled in the blanks according to historical markers I’ve seen somewhere else. 

This is me standing by my favorite fence. I'm a skinny, Caucasian dude wearing dark colored running gear with the Smoky Mountains in the back of the image.
Me and the fence

Prior to my most recent visit to the glaucoma clinic, I had intentionally been driving far less than I once did. Call it intuition.

I’m now on driving restrictions because my brain can’t be trusted to accurately depict my surroundings and the flow of traffic. While I can’t say I was shocked by the vision loss and the degradation to my optic nerves, I was a little surprised by the rapidity of progression. But you know what? I’m feeling hopeful. Maybe it’s the lapsed Won Buddhist in me, but I believe that everything is temporary—pain; suffering; good times; bad times; and the ability to see. I’m hopeful that my my other senses will pick up the slack as my vision gets worse and strangely excited to step into my newfound role as a patient advisor. I’m fortunate to work in clinical research and to know how the sausage is made, so to speak, so I’m using this experience to serve as the conduit between patients and industry to better incorporate the patient perspective. Ultimately, my goal is to reduce the time it takes to bring promising new therapies and diagnostics to the patients that need them most–even if the patient in question isn’t me.

#glaucomaniac

Spooky Tales From the Glaucoma Clinic

According to the TV, some people call this Spooky Season. While I’ve never heard the term before and assume this is nothing more than a ploy to sell me candy corn, I’ll take this claim at face value. Since nothing is spookier than sharing campfire tales of horror and fright, allow me to describe my recent, spooktacular story from my time at the haunted glaucoma clinic. Or at least the glaucoma clinic haunted by operational inefficiencies and not-so-patient-centric-practices. Consider yourself warned, this is not a tale for the faint of heart! *Ominous laughter and thunder claps sound in the distance*


Due to a number of not particularly interesting reasons, I pushed off my quarterly visit to the glaucoma clinic. Eventually, I had to settle up with the ol’ eyeball gods. Today’s visit was a doozy!

  • Though it was never messaged, the clinic was running an hour behind schedule
  • Once I got back to the exam room, I had to request Ishihara’s Test for Colour Deficiency, something I ask for…well, every time I see my care team
  • In her hurry to get my pupils dilated, the tech neglected to give me an eye exam, something that would have informed my care
  • No one was concerned that my IOP, though in the normal range, was high for me

Things got really exciting when I was lead across the clinic for fundus photography. Something about my squinty eyes and delightful facemask tipped off the tech working the old ass Topcon machine to my background in ophthalmology. After lamenting the need to take a plethora of stereo images which would later be assembled using gum and tape and subsequently manually fed into Epic EHR, I was asked what it would for me to come onboard as clinic staff. Sorry, bud. This one’s on you.


Finally, when I saw my doc, she hadn’t reviewed any of my at home visual field reports and was unable to see my fundus photography because of…reasons. After a quick exam and cursory discussion, my doc tried to bolt out of the room before I pushed to ask a few questions. She was embarrassed but happy to take the time.


In the end, I didn’t get any of the guidance I was looking for. In fact, I’ll have to return to the clinic next month for additional testing that, arguably, should have been performed during this visit, thereby providing the information I needed.


Truth be told, I’m writing this quick and spooky post for two reasons:

  • To express my frustrations and;
  • In an attempt to put myself in the shoes of a patient who isn’t familiar with or comfortable advocating for themselves. While I didn’t get steamrolled, I didn’t manage to get all of my questions answered and will have to come back in November. If this is considered a productive visit, I can only imagine how poorly it would have gone for a less assertive patient

#glaucomaniac #talesfromtheglaucomaclinic

Thank you! Stay Classy.

Ron

When I was originally diagnosed with glaucoma (and, ultimately, Wolfram-like syndrome), I did two things. First, I shared the diagnosis with my wife, Nina, my biggest champion and the love of my life. Then, I put my patient advocacy hat back on from my days at the Hepatitis B Foundation. Even if my advocacy work won’t change the course of my disease, the hope is that by building awareness of the Silent Thief of Sight, I can encourage symptom-free patients to get screened and hopefully prevent unnecessary vision loss.

Over the last 17 months, I’ve gotten heavily involved with the Glaucoma Research Foundation (looking forward to speaking at the Patient Summit!); a number of companies working to advance at home care for patients experiencing a variety of ophthalmic conditions; and as a patient advisor, that is, a bridge between patients and industry to incorporate the patient perspective in all that we do. Still, something I don’t do as much as I would like is to connect with newly-diagnosed glaucoma patients. Last month, I had the chance to do just that.

I was chatting with a mutual friend, clinical researcher, and budding patient advocate in her own right, when she mentioned a recent conversation with a neighbor. The neighbor had just received a diagnosis of glaucoma and didn’t know where to begin. She was scared and feeling a bit isolated. Would I be willing to talk? Of course!

Later that week, I had the pleasure of connecting with this patient who I now consider a friend. Mostly, I listened, though I also shared resources, and emphasized the importance of building out a care team you can believe in. We kept in touch after her first follow up appointment and we’ll be connecting again in the coming weeks. Once we make it through the current health crisis, we’re going to meetup for dinner.

With this recent experience in mind, I wanted to say a few thank yous. Thank you for the opportunity to help support you as you take charge of your health. Thank you for allowing me to learn from you and the patient community at large. Thank you, advocacy friends and soon to be friends, for all the important work you do. And thank you to those working to advance new drugs and devices for the patients that need them most. Don’t hesitate to reach out if there’s ever anything I can do to support you. I mean it. Sincerely.

#glaucomaniac