My Experience with Advocacy in Baltimore

Part of the advocacy realm that I truly enjoy is the opportunity to travel to new places and speak to different groups of people. At the beginning of March, I had two speaking engagements in Baltimore, Maryland. The flight from Los Angeles was five and a half hours and worth every minute. On Friday, March 9, I was lucky enough to speak to a genetic counseling program at the National Institutes of Health (NIH) through Johns Hopkins University. It was a small classroom with about 10 or 15 people total, plus some students watching from afar via livestream.

The women in this class were future doctors, specialists, or clinicians, and some of them will be working in clinics that handle clinical trials, perhaps for Friedreich’s ataxia. The Friedreich’s Ataxia Research Alliance (FARA) recently started sending patient ambassadors to speak at colleges, and I was lucky enough to be sent to NIH. Just hearing the names of John Hopkins and NIH was intimidating enough, but I quickly became a little more comfortable once I entered the class.

The smaller, more intimate settings are more intimidating for me because it forces the entire room to engage more. Looking into everyone’s eyes is anxiety-inducing, but I got through the hour with a brief introduction and Q&A regarding how I deal with my diagnosis. One point I stressed was their potential of being part of someone’s diagnosis of any kind, and why it is important to treat giving someone a diagnosis extremely delicately.

Within the FA community, most patients, including myself, endure a horrible diagnosis day or “D-Day.” What I said to them was to please do some actual research on whatever ailment they’re diagnosing and consider a more compassionate approach. After all, they will possibly be changing someone’s life drastically, and that needs delicate handling.

March 10 was the “Hope for ToMORROW” fundraiser held by Kristin and Ben Morrow, a wonderful family located in Baltimore with a 12-year-old daughter, Anna, who is affected by FA. I had the wonderful opportunity to meet Anna in 2017 at rideATAXIA in Southern California, and we had an instant connection. Kristin and I also spoke on the same patient-parent panel on behalf of FARA in front of the Food and Drug Administration in June 2017. A few months later, the Morrow family asked if I would be one of the keynote speakers at their annual fundraiser, and of course, I accepted.

In front of 420 wonderful people, I delivered a five-minute speech touching on the importance of clinical trials to the FA community and how the rideATAXIA program is extremely important to funding future trials. Also, I spoke on how grassroots fundraisers held by FA families all over the country make a huge impact on funding as well. It was really difficult fighting through the emotions and not breaking down during the course of my speech. I find myself getting choked up quite often when I speak, but I hope it gets a little easier over time and with practice.

In one night, the Morrow family raised $85,000 dollars for FARA. I was honored to be apart of such a warm, loving, supportive, and successful event, and it was incredible to see so many people who genuinely care about the FA community and Anna. The trip to Baltimore and having those speaking engagements was honestly mind-blowing. I never imagined my advocacy life quite like this, but I am enjoying the journey and trying to learn more about others and myself along the way.

***

Friedreich’s Ataxia 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 another 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.