"Yellow Pants" - Our Rare Diseases Are Something We Wear Every Day
February 29, 2024
“Being blind in one eye is like walking around in shiny yellow pants that you can’t take off. Every day. Forever.” This is how I once explained the constant fish-out-of-water feeling that comes from being the only person in the room (in most rooms throughout my life) with a rare disorder or a disability.
You know you’re wearing yellow pants, everyone else knows you’re wearing yellow pants, and you know they all probably have silent opinions and thoughts and biases about you because of your yellow pants – even though they’ve never met you and your yellow pants are one tiny, insignificant aspect of who you are. You wonder if you’ll be treated differently because of your yellow pants, so you work harder than most to prove yourself while simultaneously trying to blend in and “pass” for normal. But ultimately, there’s not much you can do except live your life in your yellow pants.
It’s hard not to feel trite when making a post about Rare Disease Day – something so many companies in the pharma and biotech industry do. Another box to check, another awareness day on the calendar, another post on social media. You’ll probably see 100 of these today. So instead of bombarding you with stats and facts about rare disease prevalence and mortality rates (which are alarming) or shouting that rare disease patients deserve more treatments and better care (which they do), I’ll try to share a little bit about my personal experience as someone with a rare disorder.
An Interview with Eugene Manley, Founder of the STEMM & Cancer Health Equity Foundation
January 8, 2024
ReadHealthy Communications kicked off the new year by sitting down with Eugene Manley Jr., PhD., founder of the STEMM & Cancer Health Equity Foundation, a recently formed nonprofit whose mission is to increase STEMM workforce diversity and improve outcomes for underrepresented, underserved, and marginalized populations navigating cancer diagnosis and treatment.
We discuss why STEMM and health equity are important issues personally and professionally to Eugene, the top hurdles and milestone's in the Foundation's first year, big plans for 2024 and more.
Five Lessons I Learned in My First Year as a CEO
December 27, 2023
If you would have told me on January 1 that I’d be the CEO of a small but thriving life sciences public relations firm by the end of the year, I wouldn’t have believed you. I was cruising along at my corporate PR agency job – the job I planned to retire from, as I’d tell anyone who’d listen at the time.
But, the best laid plans of mice and men, and all that.
On February 28 I found myself on the wrong end of corporate layoffs, and I was tired. Tired of job hunting. Tired of introducing myself to new teams and new people. Tired of trying to carve out my place. Tired of having to explain my visual impairment to new HR teams and ask for accommodations. Tired of trying to fit into other people’s processes and ways of doing things. Tired of feeling like a square peg in a round hole. Also, I was now 40, which, by all accounts, seems to be the age when women are just tired of everyone’s “ahem” bologna, in general.
So I figured it was time to try something new. After a little bit of wallowing, I dusted off my old LLC, ReadHealthy Communications (which I had registered a couple years before in the vague hope that I would do something with it “someday”), built a website, and decided to devote my time to building my own brand and starting a company.
After all – I’ve done brand building, awareness-raising, and public relations for other companies for the past decade and change. How hard could it be?
ReadHealthy Communications' July Spotlight on Health: Empowered Together
July 25, 2023
ReadHealthy’s Spotlight on Health is a monthly feature in which ReadHealthy Communications talks with CEOs, founders, and leaders of companies working to make the world a healthier place – from pharma to biotech to med tech and beyond. Health can mean different things to different people, and we’re here to share the stories of those working to change the world of healthcare.
In honor of Disability Pride Month in July, we sat down with Sarah Spear, CEO & Founder of Empowered Together, an online marketplace (accessible via a website) that connects disability self-advocates and caregivers with accessible, welcoming businesses in their local area.
Sarah has a 10-year-old daughter who loves swimming and creative play, and who has Wiedemann-Steiner syndrome, a rare, genetic disease that is typically characterized by distinctive facial features, growth delay, and intellectual disability.
It was through the experience of finding her daughter’s diagnosis and educating herself about what came next – accommodations, services, and what worked best for her daughter – that Sarah first became inspired to help others in the disability community to find the resources they needed.
A New Universe of Health Tech
July 17, 2023
When most people think of health tech, they might think of smart watches that track your calories, your heart rate, or how well you sleep. If they know a little bit about the industry, they might also know that health tech can be remote monitoring devices for metrics like blood pressure, blood sugar, and pulmonary function, or apps to help manage mental health and track what you eat.
What many people do not know – and what I didn’t know until I attended the HITLAB Innovators Summit at Columbia University for three days in June – is that there’s an entire universe of health tech out there beyond wearables, weight-loss apps, and blood pressure cuffs.
The universe of digital health and medical technology solutions has as many potential applications as there are stars in the sky.
Women Leaders are Leading Healthcare Innovation
June 18, 2023
Did you know that only about 2 percent of all venture capital and investor funding globally goes to women-led businesses?
I wasn’t aware of this shocking statistic until last week, and it makes me wonder what innovations and advancements the world is missing out on by excluding 50% of the population from the conversation. This is unacceptable when there are so many more challenges to be overcome, so many problems to be solved – especially in healthcare.
I was recently invited to attend venture capital organization Well4Tech’s Female Founder Pitch & Demo Day, an incredible event that showcased businesses led by woman CEOs and founders in the health and wellness technology space. There, I watched and listened as 13 incredible woman leaders pitched their health tech innovations in hope of gaining investors and partners to help make their dreams a reality.
Music Beats Cancer: One Rock Concert at a Time
June 13, 2023
“Cancer. You’ve got to go out there like a bunch of crazed dogs and get rid of that shit.”
These are the words I heard on stage at music venue Terminal 5 in NYC on the evening of June 8, when I was fortunate enough to be invited to Music Beats Cancer’s inaugural benefits concert. There, I found great music, an open bar, very creative swag-bag goodies, and a community of smart, passionate people who have dedicated their lives and careers to fighting this awful disease that kills more than half a million people each year in the U.S. alone.
Medstartr is (re)Starting Collaborative Innovation for Startup Biotechs in NYC
May 19, 2023
I recently met Alex Fair, Managing Partner at Medstartr Ventures, through our mutual connections and interests on LinkedIn. Alex helps startup biotech, med tech, and other life sciences companies fund their innovative products and ideas and helps bring great minds together in community spaces. I help life sciences companies find their voice and amplify their stories through public relations, marketing, and corporate communications so that their stories can reach investors, healthcare professionals, payers, and patients. So, connecting with Alex seemed like a no-brainer.
In our first Zoom conversation, Alex explained to me the unique model of Medstartr, which is so much more than venture funding. The company “develops innovation communities, runs events, creates conferences, runs innovation crowd challenges, and manages the leading healthcare innovation crowdfunding platform, MedStartr.com.” To help me get a better idea of what all this really means, he invited me to Medstartr’s “Healthcare Reboot 2027” even in NYC – their first in-person mind meld in the post-COVID world.
The Ties Between Physical and Mental Health – My Year of Anticoagulants and Anxiety
May 1, 2023
As today kicks off mental health awareness month, I can’t help but look back on the past 12 months (one of the three most difficult years for my mental health that I’ve experienced in my lifetime) and be glad that chapter is behind me. It’s funny-not-funny how mental health and physical health are so often intertwined for me, and how my professional life as a health communicator and a person who understands human biology, medicine, and science both helps me navigate my personal health journey while also serving to heighten my anxiety.
The toughest year of my life for keeping my generalized anxiety disorder under control was 2016, when I was diagnosed with thyroid cancer – a journey that wound through fear and depression and culminated with a total thyroidectomy on my 34th birthday. Second or equal to that was 2020; being a life-long asthmatic and watching as a brand-new virus that impacted the lungs killed thousands of people around the world every day was horrifying, to the point where I was having daily panic attacks that kept me from functioning at work.
But this past year – April 2022 - April 2023 – has definitely been on my top-three list for anxiety-fueled-by-physical-health years.
Why Having a Disability Makes Me a Better Health Communicator
April 5, 2023
“Imagine discussing vision loss with your doctor and being told there’s nothing they can do. You’re basically told, ‘Get your life in order because I have nothing that will stop you from losing your sight.’ You know that your world is closing in on you. There’s a sense of hopelessness. The things you do every day – reading, seeing loved ones, and watching the most important moments in our lives – gone.”
This is the language the CEO of a former biotech client of mine wanted to put in an article, with their name on it, in a prominent trade publication. Thankfully, I live with a rare vision disorder (not the one this company was creating therapies to treat), and I was able to offer the patient perspective, provide sound counsel, and stop the presses before this language went live.I'm a paragraph. Click once to begin entering your own content. You can change my font, size, line height, color and more by highlighting part of me and selecting the options from the toolbar.
What Having Cancer Taught Me About Health Communications
March 17, 2023
“Did I ever tell you about the time I fell off my bike and got thyroid cancer?”
I love starting my cancer journey story this way. It sounds completely illogical (especially coming from someone who tells health and science stories for a living), evokes a guaranteed reaction of surprise, and draws my listener(s) in so they want to hear more. It also happens to be (sort of) true.
Finding My Way As a Leader
March 10, 2023
I recently came upon a post on LinkedIn that discussed how to answer the question, “What do you want in a manager?”
This wasn’t something I thought about much in my early career in pharma communications and PR. My manager was just the woman or man who gave me work to do. I received it, I did the assignment, and I turned it in. End of transaction, really.
It wasn’t until I became a manager for the first time myself, in 2020, that I started to think about what a good manager was and was not. What qualities did I want to have? What attitude did I want to exude, knowing it would be contagious to younger minds? What types of relationships did I want to form with my direct reports?
My biggest reflection about becoming a manager is that it changes you, and changes how you experience your workday. Suddenly, you’re not just heads-down, chugging through your own to-do list. Being a manager forces you to pick your head up, look around, and think about other people.
