“There is hardly anybody that I’ve ever come across on the street that would be able to tell me what NF is, and that is something that I would like to change.” Washington Nationals shortstop Ian Desmond.
Washington Nationals shortstop Ian Desmond has joined the fight against Neurofibromatosis. All this week, the Natosphere has been bringing you the story of how Ian Desmond became involved in the cause. Those stories are well worth repeating.
Neurofibromatosis occurs in 1 in 3,000 births and is a genetic disorder that causes tumors to grown on the nerves.
From the fundraising website’s information section:
NF encompasses a set of distinct genetic disorders that can cause tumors to grow along various types of nerves. NF can also affect the development of non-nervous tissues such as bones and skin. NF has been classified into three distinct types: NF1, NF2 and schwannomatosis.
NF affects more than two million people worldwide, making the disease more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s Disease combined. The disease is worldwide in distribution, affects sexes equally, and has no particular racial, geographic, or ethnic distribution.
Though most cases of NF1 are mild to moderate, NF1 can in some cases lead to disfigurement; blindness; skeletal abnormalities; dermal, brain, and spinal tumors; loss of limbs; and malignancies. NF1 also has a connection to developmental problems, especially learning disabilities. NF2 is distinguished by tumors that grow on the eighth cranial nerve in both ears, commonly causing deafness, severe balance problems, and sometimes tumors elsewhere in the nervous system. Schwannomatosis can cause the development of multiple schwannomas on cranial, spinal, and peripheral nerves, resulting in problems with chronic pain.
Desmond became involved in the fight against NF through a relationship with Ethan Brown, a fan he met through a prayer request on Twitter. Desmond and Ethan forged an unlikely friendship, prompting Desmond to join the campaign to raise awareness about the disorder.
On Monday, Nationals101 spelled out what NF is and how it affects those diagnosed, explaining the differences in the types of Neurofibromatosis.
Tuesday, The Nats Blog went into detail about how Desmond got involved and the friendship he forged along the way.
Wednesday, Federal Baseball explained how social media has driven the campaign and Desmond’s role in promoting awareness.
Since May is Neurofibromatosis Awareness Month, Desmond – along with Allan Peterson of the Nationals Archive blog – introduced an Indiegogo campaign to raise awareness about Neurofibromatosis and generate donations to benefit the Children’s Tumor Foundation.
You can find the link to the Indiegogo fundraising site here.
The campaign that Desmond created has already reached its initial goal of $10,000…and counting. There are all sorts of perks and packages fans can get by donating certain dollar amounts to the campaign.
Desmond explained that he knew little about the disorder when he became involved. “I personally had never heard of NF, or NF2, or anything [before meeting Ethan]. It’s probably been a year of knowing Ethan and talking to his parents and stuff like that to really get the facts about NF. And the goal for me is awareness.”
“NF to me, and I’m sure to a lot of people, is something that they’ve never heard of. My goal is to just get this out. I want to spread the word about this thing and hopefully it can rally some people behind us. If we reach one person that can make a difference in these people who are suffering from this disease, that would be more than enough for me.
And obviously, raising some money for the Children’s Tumor Foundation. The Children’s Tumor Foundation is the first organization to reach out to Ethan when he was in his time of need early on when he found out he was diagnosed with this, so I asked him, ‘so is there a foundation that you feel is close to your heart that I can help?’, and he told me CTF is the first one to reach out to him. So, you know, that speaks volumes.”
Desmond was quick — and insistent — to point out that he and Ethan have formed a solid bond through this.
“This is not something I’m doing out of sympathy or anything like that. I truly enjoy our conversations and I really consider Ethan a close friend at this time. This is not a charity thing that I’m doing. Unfortunately, the way we were brought together was through this [disorder], but I’ve created a real friend out of this.”
Again, if you’d like to find out more about Neurofibromatosis, Desmond’s involvement, and make a donation, you can find the link to the Indiegogo fundraising site here.