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Hello everyone!
My name is Niky Roehreke and Iâm an artist and a first-time marathon runner.
My close friend Kouji Suzuki ( his nickname is Zukky ) was diagnosed with
ALS (Amyotrophic lateral sclerosis) and Iâve started this project, in order to support him
and to raise awareness and money for a future free of ALS.
What is ALS?
ALS (Amyotrophic lateral sclerosis) also known as Lou Gehrigâs disease, belongs to a wider group of disorders known as motor neuron diseases, which are caused by gradual degeneration and death of motor neurons. These motor neurons initiate and provide vital communication links between the brain and the voluntary muscles.
In ALS, these motor neurons stop sending messages to the muscles. Unable to function, the muscles gradually weaken and the brain loses its ability to initiate and control voluntary movements.
The disease is progressive, meaning the symptoms get worse over time and most bearers eventually lose
the ability to walk, use their hands, speak, swallow, and breathe.
Currently, there is no cure for ALS. There is no effective treatment to halt, or reverse the progression of the
disease. The expected life span after symptoms appear is 3-5 years and only 10 percent of people will survive for 10 or more years.
How I met Zukky
Zukky and I met about 17 years ago at a part-time job in a clothing store, right after I graduated from high
school. Zukky had always been a very passionate, focused hard worker. Since he was diagnosed with ALS
in 2017, it seems like his passion has grown even stronger and by observing what he does now, I learned
the importance to focus and follow what I love doing and to feel deep gratitude and appreciation for life.
What I want to accomplish with this project
I want to raise awareness of this rare disease and by donating the raised money to the chosen organizations, I am hoping to get one step closer to a future free of ALS.
Zukky told me: âSince Iâve been diagnosed with ALS, my life has become more interesting. I was scared of
death, but now Iâve managed to accept it. My goals in life have become more clear, I even have more goals
now. I now donât just think or say what I want to do, but I actually do them. Before ALS, I wanted to care
more about my lifestyle choices, nutrition, health and environmental issues, but now I am actively engaging
in these topics.â
Zukky himself has launched his own brand âZUKKYZâ with the message âWe will beat ALSâ, in order to raise awareness and is also donating the proceeds to those organizations that research and develop new treatments for ALS.
He designs clothings, collaborates with people from various fields, makes organic natural soaps and more.
For example the other day we were talking about plastic and trash in Japan and the next time I saw him, he was already shopping with his own designed eco-friendly tote bag :)
This is the way Zukky is and I simply canât help but wanting to support this special person!
The reason why Iâve decided to run a marathonÂ
Since I was young, I used to truly dislike running long distances, but there is an unexpected story to how it
started.
When I lived in the countryside (in Kochi) from summer 2018 until autumn 2019, I had no heating in the newly rented house, so the closer it got to winter, the colder it got and at some point it was so extremely cold,
that I had a spontaneous idea to go for a run in the mornings, just to keep myself warm. Surprisingly, every
time I ran, I felt warm throughout the day and also noticed, how I could concentrate on work better on the
days I ran.
Initially my max. was 20~25min, whenever I felt too cold. Then I bought myself a heater, which could have been the reason to quit, but around the same time my friend gifted me special running shoes. And so I couldnât quit, because he kept on asking me how the shoes are. So I first started running twice a week, then I was able to run 30min. Eventually I downloaded an app on my phone, to track how long Iâm running. To my surprise, I found that I was only running 3-4km and so I thought to myself: I can do better than that?
1-2 times a week soon became 3-4 times and in May last year I was able to run my first 10km, followed by 15km in November, and finally my first 30 km run in December!
Through running I realised, that anything I repeat, eventually becomes a habit and my body and mind naturally will change accordingly. Going up the long stairs at a train station, I felt absolute bliss when I arrived at
the top and didnât feel exhausted or out of breath.
Through practicing something that I disliked so much in the past I was able to experience changes on a
physical level which was proof to me that I can change myself.
What is the connection between running a marathon and Zukky?
Running not only has a physical effect, but for me it has also become similar to meditation.
I have a tendency to overthink, but recently Iâve noticed that Iâm more focused and I am able to stay true to my intentions.
When I go running long distances, it allows me to be in the moment, because my body is under stress and
my mind needs to stay focused. It seems to me that my mind goes into a specific state where there is only
space left for the things I truly care about.
During running, I discovered a repeated pattern entering my mind: concerns about earth. What can I give
back to earth and be of service, using my skills and experiences to the fullest?
But all these thoughts I have on runs, always end with the realization that the possible solution to all problems is: a world where everyone is happy, and by that I mean the entire living ecosystem ranging from humans, animals, plants and microorganisms.
To make that a reality, the place to start is with myself. To do things that make me happy is essential, because only then I will be able to share happiness with others. Everything starts with supporting one another in a close environment. Helping the ones that need help and doing as much as possible and giving what one can, in whatever form that might be.
When those thoughts visited my mind while running, Zukky started to appear. Zukky, who always shares his happiness with the world, and is always so passionate and does what he loves and believes in. Just by observing that, I feel he has given me so much.
So it was only natural to me when I decided to run the marathon, supporting him and help cure his disease.
I believe that our minds are immensely powerful. The power of acts of love or prayer for someone makesthings possible, that are often beyond our comprehension. I think that our beliefs and intentions ultimately
manifest themselves on earth.
Thatâs why when I run, I always visualise Zukky, walking or running around.
What you visualise will materialise, right?
Sub-4 marathon
My first marathon will take place on February 16th, 2020 in Kochi Prefecture on Shikoku Island.
Initially, I ran 6.00~6.30min per km, but finally last October my time dropped to 5.30~5.50min, then in
December I ran 30km at a pace of 5min34sec.
The first 30km was so tough and my body was in much pain, especially my knee, but now Iâm back on my
feet, training hard!
Iâm aiming to run the full marathon under 4hours, running 5.45min per km, leading to my goal of completing a marathon in 3hrs50min.
The organizationsÂ
The funds I have raised through this project, with the exception of covering the apparel and printing costs
incurred by this project, will all be sent to two organisations, âSERIKAFUNDâ, which funds finding a cure to
ALS, and the second is NID Fund which focuses on tracking down the causes of ALS.
Fundraising Partners
SERIKAFUND Â (https://landing-page.koyamachuya.com/serikafund/)
SERIKAFUND is named after Serika Ito, the heroine of the manga âSpace Brothersâ In the manga, she is
researching a way to develop a medicine to cure ALS. SERIKAFUND hopes to contribute to the same cause in the real world and is supporting the development of ALS medicines.
Proceeds will be transferred to researchers chosen by the âSerika Fund Awardâ for medial research, in order to make ALS a curable disease.
Neurological Intractable Disease Fund (https://nidfund.com)
The NID-funds are collected, in order to create a device that acts as an analyzer for cellular activities that
will reveal the mechanism behind the onset of ALS. Once this device is completed, development of new
drugs for treating ALS and new treatment methods will advance dramatically. This is their previous crowdfunding project, also written in English, so if interested to find out more,
please visit: https://camp-fire.jp/projects/view/100487
This is my very first marathon.
I never would have thought that one day I will be able to run a long distance, but now I truly enjoy the
physical and mental changes that running has given me. I see the positive influence in my work and daily life. Running has also given me an idea that I can help others, while running. Once you are able to shift the way you see things, suddenly you can be creative with anything and find a way to support someone, whilst doing something enjoyable.
I can run, so I want to run for those, who cannot run at this moment, visualising that one day my friend Zukky will be back on his feet again.
The more people support this cause, the closer we can get to an ALS free future.
Thank you for reading and I truly appreciate your time and your donations.
Profile
Koji Suzuki / ZUKKY
Founder & CEO of ZUKKYZ
Born in Fukuoka in 1980, Zukky worked for numerous clothing companies and brands.
It took Zukky six months to receive his ALS diagnosis in 2017.
He launched his own brand 'ZUKKYZ' and through clothing and other projects he aims to raise awareness and is also donating the proceeds to SERIKA fund & NID Fund.
website: ZUKKYZ
zukky instagram: @zukky2408
ZUKKYZ instagram: @zukkyz2408
Niky RoehrekeÂ
Niky is a German/Japanese artist born and raised in Tokyo.
Niky studied in London and moved to Brooklyn, New York to work as an Illustrator. After living in New York for 5 years, she moved to Orcas Island, where she lived in a trailer in the forest for a while. Now Niky lives a nomad life making art in cities and forests of Asia, Europe and the US.
website: nikyniky.com
instagram: @nikyroehreke
Products
As a thank you, you will receive products, that were specially designed for this project.
The details of each product with the color variations and sizes are listed below, and you will see the amount you can donate with the product details on the right side bar (it is also explained in english)
Sticker
Tote bag
DETAIL
T-shirt
T-shirt and long sleeve T-shirt are both screenprinted on 100% cottton shirts.
Sizing details: (in cm)
S: length 70.5 width 46.5
M: length 72.0 width 51.5
L: length 75.5 width 55.5
XL: length 79.5 width 60.5
WHITE
front
back
BLACK
front
back
Long-sleeve shirt
PURPLEÂ
BLACK
DETAIL
Poster
high-quality print poster on archival paper
Original Painting
The last two options include an original painting of your choice.
Timeline
16th of Feb 2020 : Marathon in Kochi
Feb~March 2020: T-shirt printing and production
March~ April 2020: Shipment of products
April~June 2020: Creating artwork for people who selected original art
IMPORTANT
Since this Japanese site doesnât allow for overseas people to send donations, I want to make it possible via my paypal.
Instructions:
1) Log-in to your PayPal account.
2) Go to âSend payment toâ and type in my e-mail address: nikymarathon@gmail.com
3) Type in the amount you would like to donate in YEN ( it will automatically convert to your currency)(for example â5000yenâ)and below that where it says âAdd a noteâ type in the product with your choice of color and size (for example âT-shirt, WHITE, size M)
4) Next it will ask to choose the purpose of payment, click on âPaying for an item or serviceâ
5) Make sure the âshipping addressâ is set to the address you would like me to send the product.
Shipping costs are included in the price.
Please donât hesitate to get in touch (nikymarathon(at)gmail.com), if you have any questions or problems (as the site is in japanese)
Thank you so much!
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