I’m excited to share that I’ll be facilitating a panel at BreatheCon 2023! BreatheCon is a free, online community conference for people with CF that’s happening this week from Thursday through Saturday. The session I’ll be leading is about alternative wellness therapies where I’ll be speaking alongside Dr. Julie Desch, an adult with CF, and Dr. Jonathan Grant, a pharmacist with Johns Hopkins who has worked closely with the cystic fibrosis community (and who I shared a panel with at last year’s ResearchCon!).

I’m really excited about this panel for a couple reasons. First, I just love CF events, whether it’s advocacy, panels like this one, or talking science and clinical research. They’re energizing, fun, and remind me to continue fighting for a better world for not just my friends with CF around the world, but for anybody with any identity that exposes them to harm.

Secondly, I’m excited to share this panel with Dr. Julie Desch — a legend in the CF community who I finally have the honor of working closely with — and with Dr. Jonathan Grant — a genuinely good guy, dedicated to doing right by our community through his commitment to clinical understanding and patient empowerment (also, Jonny and I are going to hoop together sometime soon). They’re both amazing people and we all quickly fell into a comfortable dynamic at our first meeting together, so I’m excited to spend an hour together at our panel on Saturday.

Thirdly, well, I’m really excited for the panel subject of alternative wellness therapies. We don’t exactly love the term “alternative wellness therapies” as the term itself conjures up a different image in everybody’s mind. But that’s kinda perfect: We want a term that generates intrigue because this is an incredibly important at times provocative subject in the CF community (and society at large).

As part of the panel, we’ll discuss how we each define “alternative wellness therapies.” I don’t want to expose too much — I want you all to register and attend! — but my operating definition of alternative wellness therapies are therapies that aren’t generally covered by insurance. Some people will distinguish some therapies as medicine by Western standards and other therapies as “alternative” or “complementary” if they have roots in Eastern medicine. I don’t personally like that definition because it implies a myth that Eastern or alternative therapies are unsupported by science. There are many therapies that have clinical support behind them but are hardly ever prescribed or covered by insurance, and some of those therapies are typically considered Eastern medicine. I prefer the definition that alternative therapies are just therapies that insurance generally doesn’t cover because in my mind this definition is a much more holistic, all-encompassing view of health; as an intersection of our environments, every body system, and our mind all pushing and pulling on each other. Anyhow, we’ll get into that in greater detail on Saturday.

Some other subjects we’ll cover:

• Cannabis. I’ll share my experience with medical marijuana, which comprises the two most famous cannabinoids, CBD and THC, which I use for general aches and pains, insomnia, depression, anxiety, and processing grief.

• Exercise. Both Julie and I will describe our relationships with exercise, which are similar but unique. Many people that have health challenges will likely relate.

• Meditation. Julie will talk about her background with meditation, which she has benefitted greatly from (whereas I have benefited from, but I’m not very consistent so haven’t gleaned as much benefit as I could).

• Acupuncture and general physical therapy. Julie will also share her experience here.

• The future of “alternative therapies.”

• And how patients should be empowered to take the lead in their care, but still must be careful to do their research and cultivate a strong, balanced relationship with their care team.

I love events like this one and I’m really excited. I believe these conversations move the needle further. This topic in particular is important and will affect every person with CF. I hope you’ll join. Register here: cff.org/BreatheCon.

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