I will be running the Boston Marathon in memory of Stephanie Foster. I want to share a little bit about what I’ve learned about Stephanie and the challenges she faced by having an undiagnosed disease. For years, Stephanie battled a neurodegenerative disorder that did not get a name. Stephanie’s story can be found on the NORD website and on youtube:
I’m sorry that I will never get to meet Stephanie—it’s obvious she was a wonderful person. I did have some brief conversations with members of the Foster family: her mom, Laurie, dad, Steve, sister, Lauren and brother, Eric. When I asked each of them about Stephanie, the same descriptors kept coming up: compassionate, selfless, desirous to help others, courageous, great sense of humor, fun-loving.
They all said that she loved comedy, which is definitely something I can relate to. Laurie and Steve said that her favorite comedian was Jeff Dunham and her favorite TV show was the Golden Girls—they helped to lift her spirit while she was sick. Stephanie had hoped to meet Betty White in-person through the Dream Foundation but unfortunately wasn’t able to. However, she did go to Disney World twice during the last months of her life. Disney was another thing she loved. Laurie and Lauren told me she also loved to dance, go bowling, her favorite color was pink, and that she liked every kind of music except for country (another thing I can relate to). I was moved when her dad Steve gave me an example of her selflessness: he told me that she would take her own belongings and wrap them to give as Christmas presents.
The Foster family also kept re-iterating that even though she fought for years, saw lots of doctors, realized that there was “no light at the end of the tunnel,” Stephanie always kept a positive attitude and did whatever she could to ensure that others would not have to go through what she did. She had a strong desire to raise awareness about research and educational efforts supported by NORD. In the last months of her life, she held a spaghetti dinner fundraiser that raised over $4000 for NORD! Her family continues her legacy by hosting live-comedy fundraisers every fall.
The Foster family also told me that they weren’t aware of NORD until years after Stephanie had become sick. Laurie told me that the NIH Undiagnosed Diseases Program (UDP) may have been the best avenue to help Stephanie, but by the time they had learned of this program, it was too late. I was surprised that even people with rare or undiagnosed diseases weren’t aware of these organizations/programs, and I’m sure it’s the same with many people. This was echoed by Stephanie’s brother Eric who said he never knew there could be a disease with ‘no name,’ until Stephanie became sick. I’ll admit that I myself didn’t know squat about rare diseases until I started working for Genzyme.
I asked all of them what they think should be done to help other people like Stephanie. Laurie thinks that doctors should be better educated about how to identify a rare disease so people don’t have to wait for several years to obtain a diagnosis. They all suggested that there needs to be more awareness and communication about organizations such as NORD—that social media and word-of-mouth can help. Stephanie’s sister Lauren even made a video at Merrimack College, where she is a student, about rare diseases (It’s a great video, check it out): https://www.youtube.com/watch?v=po7gEIOTcO4&list=UUNFBoA7LXM5MliBB_-tPohA
With that said, I think the RFRD team is on the right track. It’s great that our team has grown so much, and I think we should continue to write blogs, connect via facebook, and connect in person however possible. Ultimately we need to keep spreading the word about NORD and the UDP and to continue learning about the challenges faced by those with rare or undiagnosed disorders.
Laurie, Steve, Eric and Eric’s girlfriend Lisanne will be at the Aeronaut Brewery in Somerville tomorrow, Thursday March 5th. Please come to meet them, to learn more about Stephanie and talk about how we can help others like her.