“I actually was able to get an internship with Disney World, which was my dream job,” she said. “I was offered a regular full-time position, but I ended up getting sick.”
After a long series of doctor’s visits, Katz was diagnosed in 2014 with Postural Orthostatic Tachycardia Syndrome (POTS), a condition that causes an increased heart rate when standing upright — resulting in dizziness, migraines and more. Because of it, Katz was forced to give up her photography position at Disney World and return home to Reston to her parents, Gina and Bert.
Now 25, Katz finds herself traveling down a new path in life, raising awareness for rare diseases and chronic illnesses. She has started an awareness campaign called Spoonspirations — the name of which is a reference to “spoon theory,” a term coined by lupus patient advocate Christine Miserandino about how sufferers of such conditions must ration their energy.
“She wanted a way to describe it to people who don’t have a chronic illness, so they could understand,” Katz said. “Basically, it’s kind of like if you get up to walk the dog, you use three spoons out of your 12 total spoons for the day.”
Through Spoonspirations, Katz is using her love of art to spread the word about chronic illness. Katz studied graphic design as well as photography, and she has designed a number of different pieces of apparel for various related causes.
She is raising money for research in the process, as all proceeds from sales of the clothing are given to chronic illness organizations. In 2016, she said, she raised $8,000 that was donated in large part to Dysautonomia International and the Dysautonomia Support Network, organizations she became acquainted with through her personal journey.
This year, Katz has become involved with rare disease advocacy organization Global Genes. She will travel to Southern California at the end of the month to participate in a fashion show for the organization as part of World Rare Disease Day.
“Everyone is walking in honor of someone who has a rare disease,” she said. “I’m the only one walking who actually has a rare disease.”
Katz is hopeful that she will be able to make more connections during the event to help her expand Spoonspirations and raise more awareness for the hundreds of millions worldwide suffering from chronic illnesses.
“Rare diseases affect approximately 350 million people worldwide and often times are invisible,” she said. “So you never know who might be affected.”
Photos courtesy Nisa Katz/Spoonspirations
Reston’s Elizabeth Vandenburg was in D.C.’s Chevy Chase recently when signs dotting the community called to her.
“There was an initiative by the neighborhood, and there were signs all over the place,” she said. “Seeing these signs, it just was really inspirational.”
The signs were part of the “Hate Has No Home Here” project, which started in November in Chicago’s North Park neighborhood. Students at an elementary school devised the slogan and a local graphic designer developed the artwork. Word has gotten out and the campaign has spread across the nation and world.
Anyone can make their own HHNHH signs by downloading the artwork and taking it to a print shop. Vandenburg had 100 signs printed at Sign & Print in Herndon. One is currently in her front yard on Hunting Horn Lane and she is working to distribute the rest to friends and others who have contacted her through Facebook.
“First, I surveyed like 10 or 15 friends, and they said, ‘Sure,'” Vandenburg said. “I raised some money to do it, so I could give some away. … The 100 are pretty much accounted for.”
Vandenburg said she was encouraged to become part of the project because she feels it is important to stand up for what you believe.
“I’ve been an advocate for a lot of different issues, and I wanted my voice to be heard,” she said. “I wanted to feel inspired as I went around Reston. I know Reston is inclusive and supportive of these causes, but having it be visible gives my heart a lift.”
The project defines itself as non-partisan:
This sign is a public declaration that hate speech and hateful actions against others will not be tolerated by the person or organization displaying the sign. In that, it is apolitical. This sign is a statement that, while it is OK to disagree with others civilly regarding issues, it is not OK to intimidate or attack a person or group — verbally or physically — based on attributes such as gender, ethnic origin, religion, race, disability or sexual orientation. The colors of the sign — red, white and blue — are the colors of the American flag, not any political party.
Vandenburg said, however, that issues such as President Trump’s recent executive order on immigration emphasize the importance of the project’s message.
“It’s a privilege to be an American,” she said. “I believe it’s my responsibility and duty to speak up.”
For more information on the project, visit its Facebook page.