Wednesday, July 12, 2017

DC Trip Recap

In April, I had the chance to take a trip to DC to participate in a Patient-Focused Drug Development (PFDD) meeting between the FDA and Cure SMA. This was only the second PFDD to be led and organized by an outside group rather than the FDA, so it was a big deal and an amazing accomplishment for Cure SMA.

The meeting was held in a hotel/conference center in Maryland, about 30 minutes outside DC, and was attended by members of the FDA, pharmaceutical representatives, and patients and families affected by FDA. It was great to be able to share more about SMA and how it affects my daily life, and to talk about what kinds of treatments would be beneficial for me. It was also incredible to hear stories from panelists and other participants with SMA – it’s a rare disease, so I don’t regularly meet other people affected by it!

The timing of it was especially exciting because a few months earlier, the first ever drug for SMA was approved by the FDA. Currently, it’s not something that I’m eligible to use, but it’s a HUGE step forward in treatment and makes me hopeful for more treatments in the future.

My whole family went to the meeting – both of my parents, as well as my sister, who also has SMA. We stayed in the area for a long weekend, giving us some extra time to explore DC. We’ve been there numerous times, but it’s one of my favorite cities to visit – there’s so much to do! We also have to limit our activities each trip since it takes us longer to get ready and get around, so we never have time to do everything in one trip.

The National Zoo is one of my favorite things to do when I visit. I love animals – it’s my dream to go to South Africa someday to see them up close in the wild. The National Zoo also has panda bears, and is one of the only zoos in the US that has pandas! It’s free to visit, and always a nice time to walk around and see the animals. 




There are so many amazing museums and monuments to visit – this time, we stopped in the National Portrait Gallery, where we saw some Pittsburgh favorites, and the American History Museum, where we got to see Dorothy’s ruby slippers! The American History museum also had a beautiful display of the first lady’s dresses throughout history, and a section on the Revolutionary War that I looked through for Hamilton references.

As much fun as the zoo and museums are, I also really love to just walk around DC and explore fun places to eat and drink. This trip, we finally made it to Zaytinya, a Jose Andres tapas-style restaurant. Everything we ordered was delicious, and it deserves all the praise it gets. Sadly, my pictures don't capture much of the beautiful outdoor patio, but I cannot recommend it highly enough!






What are your favorite things to do in DC?

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