The joy of meeting fellow members of the Bionews family

I recently had the pleasure of meeting Friedreich's ataxia columnist Matt Lafleur

Written by Natalie Sirota |

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I started my journey with Bionews, the parent company of this website, many years ago by signing up for a newsletter when my daughter was diagnosed with hereditary angioedema (HAE). A couple years ago, I replied to an inquiry asking for volunteers to film a video explaining the body’s reaction during an HAE attack. Then I applied to become a columnist, and the rest is history.

Writing for Angioedema News has been therapeutic for me. It has helped me vent about my daughter’s arduous journey to diagnosis, how stress can be a trigger for HAE, angioedema prodrome symptoms, dealing with multiple other diagnoses on top of HAE, and even medication changes. Having an outlet to share with others who might also benefit from my trials and tribulations helps me make lemonade from my rare disease sour lemons.

Bionews is incredible in many ways. Not only does it offer multifaceted informational sources for multiple rare diseases by sharing both basic facts and cutting-edge research, but also community through social media platforms and disease-specific forums, where we patients and caregivers can discuss issues among ourselves.

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I’ve been honored to meet so many wonderful people through Bionews — some virtually and others in person. Everyone who works at this company is so compassionate and understanding, something that many of us in the rare disease community find lacking in other relationships. Sadly, I feel my health challenges are often misunderstood in other realms.

Two people in wheelchairs and one woman standing behind them pose in front of a large staircase and the entrance of a large, white, historic building with two U.S. flags flying on either side.

Front from left, columnist Natalie Sirota’s daughter Leah and FA columnist Matt Lafleur; in back, Natalie Sirota, at the Stanley Hotel in Estes Park, Colorado. (Courtesy of Natalie Sirota)

I’ve never met a movie star or a media personality. However, recently I had the opportunity to meet my Bionews hero, Matt Lafleur, the company’s associate director of patient engagement and a columnist at Friedreich’s Ataxia News.

Getting to know Matt through our company meetings, virtual happy hours, and community posts, I’ve been truly motivated. Seeing the workout videos from Friedreich’s Ataxia News‘ inclusive and adaptive fitness series “Rare Moves” puts my exercise routine to shame, but it also encourages me. I also enjoy geeking out in our online forums over movies, trivia, and superheroes. (No DC vs. Marvel debates here, please!)

Therefore, I was thrilled to discover that Matt was coming to the mountains of Colorado for a brief engagement. I reached out immediately to see if we could meet in real life. My husband and daughter wanted to join us as well. Leading up to that weekend, I tried not to fan-girl out too much.

Matt is a lovely Southern gentleman from Louisiana with a sweet drawl. We met over brunch at the Stanley Hotel in Estes Park, accompanied by his father and my family. We had a fabulous time just enjoying each other’s company. It was a short but sweet visit. Thank you again, Matt, for taking time out of your busy schedule to spend some time with us! You are amazing and I feel so blessed to know you.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.

Natalie Sirota avatar Natalie Sirota

About the Author

Originally from Kentucky, Natalie spent many years in the Washington, D.C., area and now resides in Colorado. As a former teacher and mother of eight (four biological, three stepchildren, and one adopted), she knows a bit about managing life on multiple fronts. She personally juggles her own health with multiple diagnoses of invisible diseases including Elhers-Danlos syndrome, chronic Lyme disease and dysautonomia, mast cell activation syndrome, irritable bowel syndrome, neurofibroma, and hereditary angioedema. As a caregiver for her daughter who also lives with chronic illness and many rare diseases for 10 years now, she has learned a great deal about navigating the healthcare system and hopes to inspire others to empower themselves with the knowledge and fortitude she has developed. While she knows all too well that sometimes her body just says, “not today,” she understands that her body does not define her or her self-worth. She is excited to share her knowledge with others and is thrilled to have the chance to give back to the community.

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