Throughout the month of May, Nationals shortstop Ian Desmond has been leading the charge in the Washington baseball community to raise awareness about neurofibromatosis (NF), a genetic disorder diagnosed in children and young adults. Desmond’s campaign has coincided with NF Awareness Month, and has shined a bright spotlight on a serious and prevalent disease that, alarmingly, has persisted quietly outside of public awareness.
The effort has been a great success. The online fundraiser, operated through crowdfunding site Indiegogo, has raised over $27,000, almost three times the initial goal. Proceeds from the campaign directly benefit the Children’s Tumor Foundation. In addition, and just as importantly, the campaign has brought the Nation’s Capital’s attention – and national attention – to the cause, resulting in media mentions, a trending #EndNF Twitter hashtag, and thousands of visits to the campaign page. Ian Desmond wanted to raise the disease to the public’s awareness, and he has done just that.
Ian Desmond’s involvement with the cause has been motivated by his friend, Ethan Brown, who suffers from type 2 NF. Desmond himself explains his inspiration in this short YouTube video, which we encourage everyone to watch.
While Ethan and Ian’s friendship (described in depth at Federal Baseball) was the catalyst for this effort, the fact that NF affects many of us within the community has been a continued source of motivation to do our part to fight the disease. Since the beginning of the campaign, many Nationals fans have stepped forward to share their own stories. These are a few examples.
Jen U. shared the story of her closest friend, whose two young children both have the disease. Her son, only eight years old, has already undergone several surgeries and is currently suffering from a large and growing neurofibroma (tumor) in his neck. Her daughter has tested positive for the disease but has not yet exhibited any serious symptoms. The family actively fundraises for the cause as they prepare for what comes next. You can read more about their efforts at the Moss House Blog.
Another fan, Lisa R., shared her own story of a close friend who kept his battle with the disease a secret until he saw Lisa mention this very campaign. Diagnosed before the age of 8, he has suffered from tumors inside and outside of this body. Though a brain tumor has caused debilitating headaches throughout his life, it was often the external tumors during childhood that caused painful teasing and taunting. Now, thanks to various forms of treatment, he is 33 years old and living independently with the disease.
Others outside of our fan community have revealed their struggles with the disease as well. Jake Burke shared with us his moving story of his nine-year-old son Jack, who is in the middle of a 52-week chemotherapy treatment schedule to combat the disease. The family is heavily involved in fundraising and awareness-raising for the cause, including producing this heartfelt, poignant video, which we recommend you watch: Jack’s Journey.
These are only three examples of many emotional stories, pictures, and expressions of gratitude that have been shared by the community over the course of the month. Unbeknownst to most people, neurofibromatosis affects one in 3,000 people, including many within the Washington Nationals fan community. It may affect someone you know. To be able to work together to try to fight this widespread disease, and to hear these stories and heartfelt thanks from those affected, has been truly humbling.
There are only a few days remaining in Neurofibromatosis Awareness Month. Please help us finish this campaign strong. And though May 31 may mark the end of the fundraiser, it does not by any stretch mark the end of the fight to #EndNF. Please help us keep the momentum going by spreading the word well after this month ends.
(Video courtesy of MLB Advanced Media, L.P. All rights reserved)