Retrospective Lily

What does it REALLY mean to be lucky?

I pondered this question as I sat comfortably in my power wheelchair, sipping Coke through a straw while clicking the “Deal/Draw” button on a “Double Double Bonus Poker” machine at Valley Forge Casino.

I wasn’t feeling lucky in that particular moment; I hadn’t gotten a really good hand in about 30 minutes. In fact, I’d already adjusted the bet to 25 cents per play so I wouldn’t go broke. But my thoughts soon drifted far away from the flashing lights and loud noises around me.

~

Last weekend, I visited King of Prussia, PA to attend the annual FARA Symposium (Friedreich’s Ataxia Research Alliance). The day beforehand, I attended rideATAXIA Philly (a fundraiser for FA).

I have been to this event 9 or 10 times. For context, I was diagnosed with Friedreich’s Ataxia at 16-years-old in 2009 (symptoms began at age 11). I started attending the Symposium in 2013. Aside from a few years when it was cancelled or modified due to Covid-19, I have gone every year. And although October is already magical, this trip is always the highlight of my month, if not the whole end of the year.

Some things have changed over the years. Attendance used to cost a chunk of change, but thankfully, it is now free. Pre-pandemic, the lunch meals weren’t individually pre-packaged. (One year, waiters served us all plates of salad). Sponsors representing pharmaceutical companies didn’t offer as many free goodies to Symposium attendees. The agenda used to put all the science/research jargon first, then have patient panels last. Now, the schedule is laid out more thoughtfully, with a good mix of heavier and lighter topics throughout the day. We only started taking an official FA group photo a few years ago (though I am posting an unofficial one from 2015 below).

The most significant change is that we now have an FDA-approved treatment for our disease, omaveloxolone aka SKYCLARYS. Yayy!! (Here are my reflections from 2019, the year it was passed.)

The primary reason I go has NOT changed: reconnecting with old friends and making new ones.

Over the years, I’ve met SO many people with FA – along with their parents, husbands/wives, kids, friends, etc. Usually, we use social media to keep up with each other.

A handful of the people I met in 2013 are still there every time. Most of the ones I’ve befriended attended once, or a few times, but stopped coming eventually. I hope I see them again someday. But I’m grateful their paths crossed mine – thankful I’m still tied to them – blessed to watch their lives flourish as the years fly by.

I can’t emphasize enough how much it uplifts my spirit to make and keep those connections.

Here is the official group photo for 2025. (Note that my left foot is turned in the same way in both pictures, 10 years apart. Go figure. FA is so annoying, lol.)

~

A couple times this weekend, when people asked where I was staying, I told them about the casino. Then, I jokingly added, “I’m not lucky. I DO have a rare disease, after all.”

In all seriousness, maybe I’ve got it wrong. My FA diagnosis is an outlier, but otherwise, I’m very lucky. I have a big family, a church family, good friends, the FA community – so much love and support. I live in a beautiful place, North Carolina. I can get just about anything I want or need, within reason (maybe not a $3,000 designer purse, but I’m a Goodwill girly anyway).

Now, if only my luck in life translated to the casino… 😉