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How This Silent Disease Helped Me Find My Voice

Health

Every morning, I wake up and take upwards of 20 pills. And no, I am not 90 years old. From the outside, I look like an ordinary, exhausted, 24 year old striving to find balance and contentment in all aspects of my life: I work part-time for my namesake PR firm, frequent classes at DePaul University for my Master's program and attend the occasional industry party. Where I differ is under the skin: I have chronic Lyme disease.


Two years ago my world was turned upside down by an undiagnosed illness. I had flu like symptoms, intense joint pain and began to lose my memory and hearing. While I was once a thriving, productive member of society, I found myself essentially bedridden with no answers. Because I had multiple symptoms of many other chronic illnesses, such as Thyroid Cancer, MS, Lupus, Leukemia, Fibromyalgia, Non-Hodgkin's Lymphoma, and Chronic Fatigue Syndrome, I went through two solid years of medical testing and retesting, with negative results each time. I was eventually told by one of the specialists that my illness was "all in my head." It took me two years and eight specialists to find a doctor that would go on to test me for Lyme disease. With a long track record of seeking answers, I finally got one. When I was diagnosed, I had no idea that this illness would go on to positively impact my life.

According to Global Lyme Alliance, "Lyme disease is a complex infection that can affect various systems in the body including the joints, nervous system, heart, and skin. Lyme and other tick-borne illnesses often go undiagnosed and untreated, leading to deep-seated infections and long-term impairments. Many symptoms of Lyme are similar to other illnesses, which complicates diagnosis."

Chronic Lyme disease is a hot topic in the medical field: traditional MD's insist it does not exist or that it cannot live in the body past 30 days but upwards of 300,000 U.S. residents tell another story. According to Global Lyme Alliance, 55 percent of Lyme disease diagnostic testing is inaccurate and more than 20 percent of those diagnosed with Lyme go on to experience severe symptoms past 30 days. Most battling Lyme do not have medical treatment covered by insurance and spend thousands of dollars every week to get the care necessary to stay alive, including myself. When I talk about my battle with Lyme, as horrible as it may be, I always say that I am one of the lucky ones because I am able to afford treatment. Most cannot and suffer the long-term consequences of untreated Lyme disease that can tragically end in death.

Alex Moresco (R) at Lyme Disease Fundraiser

After having to take a massive step back from work to receive treatment, I refocused my efforts on helping the hundreds of thousands of people suffering from my “invisible" illness. Through a mixture of research and reality TV (former Real Housewives of Beverly Hills star Yolanda Hadid is closely involved in the organization), I discovered the Global Lyme Alliance and quickly realized that I could leverage my professional expertise in PR, marketing and social media to fuel my personal passion of raising awareness and funds for Lyme disease. In that moment, I felt a bit of normalcy return to my life as if my old and new world had married in the most authentic way possible. I felt more hopeful and confident in my personal and professional purpose than ever before.

“People who are passionate and connected to any cause, especially those that are disease related, can truly make a difference in people's lives. With Lyme disease, it's patients like Alex, who have personally committed to take on this challenging and often chronic disease through raising awareness of, and funding for, improved understanding, diagnosis and treatment. She is a shining star for all those suffering from Lyme disease and admired greatly by all of us here at the Global Lyme Alliance."

– Scott Santarella, CEO of Global Lyme Alliance.

Alex Moresco (R)

While my battle with chronic illness took away my drive to be a public relations tycoon, it afforded me a renewed spirit in helping others. As a result of my day-to-day fights with Lyme and weathering the storm, I have been blessed with mental clarity. A chronic illness like Lyme disease is an emotional roller-coaster to say the least. To boot, it is a humbling transformation that makes you realize just how insignificant your “first world" problems.

Freelance writer Kerry J. Heckman had a similar epiphany after being diagnosed with Chronic Lyme disease and autoimmune illness.

"When I was diagnosed with Lyme and autoimmune illness I realized how small the things I used to worry about were and refused to waste another minute of my life not following my passion. I consider my diagnosis my wake up call--a roadblock that was telling me I was headed in the wrong direction and needed to turn around. I'd always loved to write, but being diagnosed with Lyme gave me a story to tell and a way to connect with other people through my words. It is often the greatest hardships that help you find your voice."

While Heckman uses her journalism skills to advocate for Lyme disease awareness, I turned to what I knew: public relations. I tasked myself with getting an underrepresented subject into the media. How does one do that? They throw an unforgettable party. Knowing the Global Lyme Alliance was based on the East Coast and potentially had the opportunity to expand West, I knew this was a golden opportunity to make a huge impact. After relentlessly emailing the Global Lyme Alliance for three months, an email from their team finally made its way to my inbox in May.

An important word to keep in mind when you are chronically ill is "persistence." I have always been a persistent person, originally stemming from wanting to prove cynics wrong that made a snap judgment on my skill set based off of my age without knowing me. However, fighting a chronic illness awakens a new kind of persistence. Not only are you battling a life or death situation, but you feel a dire urge to do something about it for others that potentially have it worse than you do. In my initial outreach to GLA, their response was skeptical at best- and for good reason. Here I was, an unknown recently diagnosed 24 year old asking them to let me throw a namesake event for their organization in a brand new market. While everyone involved eventually agreed that Chicago was the right move for growth, what they didn't understand was: I was never going to take no for an answer. After my life was turned upside down, I was searching for a purpose and due to my severe memory loss, I had to be honest with myself - it could no longer be work. Persistence in a personal passion makes you do crazy things and sometimes those crazy things actually work out.

I quickly connected with another GLA volunteer based out of Chicago, Kasey Passen, and spent the next four months on the phone asking for donations: you name it, we asked for it. Building on persistence, living with a chronic illness takes your ability to be resourceful through the roof. You have to work ten times harder than the person sitting next to you to accomplish the task at hand but personally, that just deepens my drive to not only get it done, but get it done right. Through the planning process, I fused my PR skills into everything I did. If I didn't have a contact somewhere, I found a way. If someone didn't reply, I followed up. Long story short: never be afraid to cold email someone and ask to have a quick call. Nine times out of 10, they will give you 10 minutes of their time if you have a clear ask.

"Invest in taking a personalized approach when reaching out and making the ask. Avoid beating around the bush - clearly outline your objectives and communicate how your organization and the targeted brand align and benefit one another. Additionally, make it easy for them to want to help you by conveying the impact your organization or event has made along with other creative ways they can cross-promote your cause. PR reps need to know the who, what, when, where and why so they can relay the value and authenticity of the opportunity, outside of just doing good, to their client in hopes they will jump on board," says Lindsey Palmer, founder of PR and brand strategy agency Palmer Public Inc.

“They say there's no “i" in team, and in truth there's no “i" in PR either. In this industry, it's nearly impossible to exist in a vacuum. Working creatively and collaboratively always leads to bigger successes, and surrounding yourself with a group of people all working toward the same goal makes the long days and extra work so much more meaningful." - Natalie Mazzarella, Publicist and Content Creator.

In the end, by strategically leveraging my professional expertise and documenting my Lyme story and relationship with GLA on the first-ever “PRGirl" web series, The SubLyme Soiree was a huge success. We doubled our fundraising goal and brought in over $60,000. The energy at the sold out event space was absolutely electric and I largely believe this was because of the team I surrounded myself with. Many of us in public relations are not only workaholics, but control freaks. We like things done a certain way, at a certain time and OUR way- which is not always the right way. In business, I always knew to surround myself with people that were not only better than me, but also carried a varying skill set that would add value to the task at hand. The same can be applied to fueling personal passions, whether it is launching a side project or working with a nonprofit.

While our first instinct when building a brand is traditionally to move as quickly as possible, according to publicist Natalie Mazzarella, we should be working in collaboration with others:

“They say there's no “i" in team, and in truth there's no “i" in PR either. In this industry, it's nearly impossible to exist in a vacuum. Working creatively and collaboratively always leads to bigger successes, and surrounding yourself with a group of people all working toward the same goal makes the long days and extra work so much more meaningful," Natalie Mazzarella, Publicist and Content Creator.

Alex Moresco

Fellow Lyme advocate and writer Hannah Wright put it best: "Lyme disease made me comfortable in my own skin, which is ironic because our bodies are literally attacking us." I would have to agree with Wright- going to bat for something you truly, deeply believe in takes the fear out of failure versus success: ultimately, you will step up to the plate and get it done.

Author Ally Hilfiger believes we all have the power to do something meaningful with our lives:

"After a very long battle with Lyme disease, I chose to use my platform and business skills to help raise awareness and funding for an important and unacknowledged disease instead of wallowing in self-pity. Standing up to make a difference in the lives of our children and future generations, who are most at risk at getting this disease, has given me inspiration and motivation to push forward and stay healthy and strong. We all have the power to do something meaningful with our lives, and I am grateful to have the experience in business to be able to help." – Ally Hilfiger, Author, Advocate and GLA Board Member.

I may only be one voice out of thousands, but I am happy to share my narrative in hopes of spreading light and awareness to this important invisible disease. When you are faced with adversity, you can do one of two things: roll over and let it become you, or stand up and do something about it. While a chronic illness or misfortune will become ingrained in who you are, in helping others we help ourselves heal.

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Fresh Voices

My Unfiltered Struggle of Introducing a Product to a Neglected Market

Sweaty Palms & Weak Responses

Early spring 2018, I walked into the building of a startup accelerator program I had been accepted into. Armed with only confidence and a genius idea, I was eager to start level one. I had no idea of what to expect, but I knew I needed help. Somehow with life's journey of twists and turns, this former successful event planner was now about to blindly walk into the tech industry and tackle on a problem that too many women entrepreneurs had faced.


I sat directly across from the program founders, smiling ear to ear as I explained the then concept for HerHeadquarters. Underneath the table, I rubbed my sweaty palms on my pants, the anxiousness and excitement was getting the best of me. I rambled on and on about the future collaborating app for women entrepreneurs and all the features it would have. They finally stopped me, asking the one question I had never been asked before, "how do you know your target audience even wants this product?".

Taken back by the question, I responded, "I just know". The question was powerful, but my response was weak. While passionate and eager, I was unprepared and naively ready to commit to building a platform when I had no idea if anyone wanted it. They assigned me with the task of validating the need for the platform first. The months to follow were eye-opening and frustrating, but planted seeds for the knowledge that would later build the foundation for HerHeadquarters. I spent months researching and validating through hundreds of surveys, interviews, and focus groups.

I was dedicated to knowing and understanding the needs and challenges of my audience. I knew early on that having a national collaborating app for women entrepreneurs would mean that I'd need to get feedback from women all across the country. I repeatedly put myself on the line by reaching out to strangers, asking them to speak with me. While many took the time to complete a survey and participate in a phone interview, there were some who ignored me, some asked what was in it for them, and a few suggested that I was wasting my time in general. They didn't need another "just for women" platform just because it was trending.

I hadn't expected pushback, specifically from the women I genuinely wanted to serve. I became irritated. Just because HerHeadquarters didn't resonate with them, doesn't mean that another woman wouldn't find value in the platform and love it. I felt frustrated that the very women I was trying to support were the ones telling me to quit. I struggled with not taking things personally.

I hadn't expected pushback, specifically from the women I genuinely wanted to serve.

The Validation, The Neglect, The Data, and The Irony

The more women I talked to, the more the need for my product was validated. The majority of women entrepreneurs in the industries I was targeting did collaborate. An even higher number of women experienced several obstacles in securing those collaborations and yes, they wanted easier access to high quality brand partnerships.

I didn't just want to launch an app. I wanted to change the image of women who collaborated and adjust the narrative of these women. I was excited to introduce a new technology product that would change the way women secured valuable, rewarding products. I couldn't believe that despite that rising number of women-owned businesses launching, there was no tool catered to them allowing them to grow their business even faster. This demographic had been neglected for too long.

I hadn't just validated the need for the future platform, but I gained valuable data that could be used as leverage. Ironically, armed with confidence, a genius idea, and data to support the need for the platform, I felt stuck. The next steps were to begin designing a prototype, I lacked the skillsets to do it myself and the funding to hire someone else to do it.

I Desperately Need You and Your services, but I'm Broke

I found myself having to put myself out there again, allowing myself to be vulnerable and ask for help. I eventually stumbled across Bianca, a talented UX/UI designer. After coming across her profile online and reaching out, we agreed to meet for a happy hour. The question I had been asked months prior by the founders of my accelerator program came up again, "how do you know your target audience even wants this product?".

It was like déjà vu, the sweaty palms under the table reemerged and the ear to ear smile as I talked about HerHeadquarters, only this time, I had data. I proudly showed Bianca my research: the list of women from across the country I talked to that supported that not only was this platform solving a problem they had, but it's a product that they'd use and pay for.

I remember my confidence dropping as my transparency came into the conversation. How do you tell someone "I desperately need you and your services, but I'm broke?". I told her that I was stuck, that I needed to move forward with design, but that I didn't have the money to make it happen. Bianca respected my honesty, loved the vision of HerHeadquarters, but mostly importantly the data sold her. She believed in me, she believed in the product, and knew that it would attract investors.

From Paper to Digital

We reached a payment agreed where Bianca would be paid in full once HerHeadquarters received its first investment deal. The next few months were an all-time high for me. Seeing an idea that once floated around in my head make its way to paper, then transform into a digital prototype is was one of the highlights of this journey. Shortly after, we began user testing, making further adjustments based off of feedback.

The further along HerHeadquarters became, the more traction we made. Women entrepreneurs across the U.S. were signing up for early access to the app, we were catching investor's attention, and securing brand partnerships all before we had a launched product. The closer we got to launching, the scarier it was. People who only had a surface value introduction to HerHeadquarters put us in the same category of other platforms or brands catering to women, even if we were completely unrelated, they just heard "for women". I felt consistent pressure, most of which was self-applied, but I still felt it.

I became obsessed with all things HerHeadquarters. My biggest fear was launching and disappointing my users. With a national target audience, a nonexistent marketing budget, and many misconceptions regarding collaborating, I didn't know how to introduce this new brand in a way that distinctly made it clear who were targeting and who we were different from.

I second guessed myself all the time.

A 'Submit' button has never in life been more intimidating. In May 2019, HerHeadquarters was submitted to the Apple and Google play stores and released to women entrepreneurs in select U.S. cities. We've consistently grown our user base and seen amazing collaborations take place. I've grow and learned valuable lessons about myself personally and as a leader. This experience has taught me to trust my journey, trust my hard work, and always let honesty and integrity lead me. I had to give myself permission to make mistakes and not beat myself up about it.

I learned that a hundred "no's" is better than one "yes" from an unfit partner. The most valuable thing that I've learned is keeping my users first. Their feedback, their challenges, and suggestions are valuable and set the pace for the future of HerHeadquarters, as a product and a company. I consider it an honor to serve and cater to one of the most neglected markets in the industry.