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藤田正裕

1979年東京生まれ。
マッキャンエリクソン、プランニングディレクター
筋萎縮性側索硬化症 (ALS) 患者
2010年11月に難病診断を受け、現在は自宅から仕事を続けている。
難病ALSの認知を高めるため、自らの体験を自らの言葉でシェアしていきたい。

Hiro Fujita
Planning Director at McCann Erickson
ALS Patient (a.k.a. Lou Gehrig’s disease)
I am not a creator or an entertainer that people may know. However, I do have a few things to share through my fight against ALS. This has been a devastating yet invaluable experience. I grew up as an expat’s child in Europe, U.S., and Japan; I was an all star athlete in soccer, football and track; I work with the most talented and caring group of professionals at the biggest advertising agency; I am surrounded by hundreds of loving family and friends; I drank and partied like a rock star; But I have never truly realized or appreciated what I had been blessed with until I encountered ALS. Every value I have had has changed. I hope I can share some of this with you and inspire any kind of action to eliminate similar injustices.  Let’s go.

http://end-als.com/

Facebook: http://www.facebook.com/people/Hiro-Fujita/826240262
Email: hirofujita.als@gmail.com

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wonderful world i miss

May 26, 2015

what a wonderful world...
a group of amazing high schoolers across the pacific from Everett Alverez High in California decided to CONTINUE their support to end ALS.
they did a GREAT video for the ice bucket challenge (here) last year but also understood that the fight still continues.
leading by example they participated in an activity to raise awareness of ALS while experiencing what it's like to have it.
GORON you lay down for a designated time and don't move a finger. even if an ant crawls in your nose DON'T MOVE. only your eyes. that's where i'm at to put it simply.
ANYWAY as these students show you, it sucks.
try it. on 6/21 global ALS day and share the pain

THANK YOU guys for all the love.
this video is perfect. it explains the issues, our efforts to overcome it, everything perfectly.
while giving us hope that one day...
i hope to see you someday and personally thank you for fixing me... arigato


すばらしい世界だ...
カリフォニアのアルバレス高校の生徒が去年のアイスバケツチャレンジをやってくれた(ここ)。だが我々の闘いはまだ続いている事を理解してくれて今年はゴロンをしてくれた。皆何かを感じてくれたようだ。ゴロンとは一定の時間ヨコになり1ミリも動かない、例えアリが鼻に入ってきても動かせるのは目だけ。それを大勢でやり認知を高めながらALS 体験をする活動。
皆も621のグローバルALSの日にでも。生徒が言うように辛いけどいろんなきづきがあると思います
彼らはそれをすすんでやってくれた高校の人間たち。
感謝しても仕切れない。いつか恩を返したい。
ありがとう、、、



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NHKでALSについて議論 5/4

April 29, 2015

先日、4・27にNHKのハートネットTVにフィーチャーしてもらった番組が放送されました。
見逃した方は5・4の1時に再放送です。

と同時に同じ日に今年第2弾が夜8時に放送されます。
風間さん、若旦那さん、サヘル・ローズさん、宮澤佐江さん、そして去年末にALSと診断された岐阜FCの恩田社長とALSについて対談しました。
皆に関係する内容なので是非ご覧くださーい!

http://www.nhk.or.jp/heart-net/tv/calendar/2015-05/04.html

恋しい、、、
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it's all good

April 11, 2015

i often get asked "how's life?"

should i answer with the rawness? or just with what i always say ... it's all good.
should i/we throw the negative reality at you ? do you REALLY want to feel it every time?
the tears filled of shame from waking up to diarrhea all splattered in my boxers and not being able to do a damn thing about it, but wait, to be wiped down?
the frustration of not being able to communicate what i want/ need to my caregivers or family?
the fact that how people around feel or are fatigued that day, DIRECTLY affects my day?
and again, not being able to do a damn thing about it?
the heart ripping rage inside from not getting my opinions heard or from feeling so damn helpless in this world
or maybe the sorrows of imagining "what could have been"?
or the loneliness of watching everybody do things i envy... so much... ?

... naaahh... it's all good... i'll keep it in, to keep you close ...


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