Archive for the ‘Retinoblastoma’ Category

Reid My Mind Radio: Get On Board With The Blind Captain

Wednesday, September 27th, 2017

Ahmet in his kayak on a blue sea with a beautiful beach in the background.

Holman Prize winner Ahmet Ustunel says the water is his “happy place.” Hear all about his plans to be the first blind person to independently kayak from Europe to Asia… alone!

Plus the water being my Happy place means Ahmet and I have at least two things in common.

Resources

Transcript

Show the transcript


TR:

What’s up RMMRadio Family…

If you’ve been here before, welcome back! If you’re a new jack, come on in…
take your shoes off if you like, it’s
not mandatory in my house, but I do want you to be comfortable.

Let’s get it! All aboard!
All Aboard!

[Audio: Ship Horn]
[Reid My Mind Theme]

TR:
In this second of our three part series, we’ll meet another winner of the Holman Prize.

The prize is named in honor of James Holman.
Known as the Blind Traveler, Holman completed a series of solo journeys taking him to all inhabited continents.

Sponsored by the San Francisco Lighthouse $25,000 is given to each of the winners who are all legally blind and in their own way exhibit the adventurous spirit and attitude of James Holman

Ahmet Ustunel Our featured Holman Prize winner today like James Holman, is quite comfortable on the water.

I spoke to him via Facebook Audio while he was at home in San Francisco.

Ahmet:
I am originally from Turkey. I have been in the US for about 11 years now.
In my free time I like water sports. I like swimming, kayaking, fishing, sailing.

I’m totally blind since the age of two and a half or three due to Retinoblastoma.

[TR in conversation with Ahmet:]

I’m also a Retinoblastoma survivor Sir.

Ahmet:
Man, yeh, wow!

TR:

Retinoblastoma, is a rare childhood eye cancer that usually affects children before the age of years old.
By rare we’re talking about seven thousand children a year.

In the US and other developed nations the survivor rate is
around 90 percent with significant children losing sight.
In under developed nations, the rates are reversed and children’s lives are lost.

One common sign possibly indicating Retinoblastoma is a
white reflection in a child’s eye resembling that of a cat’s eye reflecting light.

Early diagnosis and treatment are key to saving both lives and sight.

By the time Ahmet’s cancer was detected, doctors in Turkey
were out of options to help.

Ahmet:

One of my relatives was in Germany working at a children’s hospital as a janitor so my Gran Ma took me there and they treated me there with radiation an enucleation.

TR:

Enucleation or the surgical removal of Both his eyes, Ahmet returned home to Turkey now as a blind child.

Ahmet:
I was lucky in terms of having really supportive people in my family. I grew up in a really big family. Everybody had a different approach in terms of blindness.

I was the only blind person in the family and even in the town I guess. I didn’t know any other blind person.

[TR in conversation with Ahmet]

Wow! How big of a town are you talking about?

Ahmet:
Maybe like ten fifteen thousand people.
Then I moved to Istanbul which is like fifteen sixteen million people and that actually changed my life.

TR:

Ahmet was aware of the contrasting dynamics in his family as it pertained to his blindness. Some were over protective while others wanted to help him do the things other little boys were doing.

Ahmet:
Ride a bike, tie hooks on a fishing line… avoid Sting Rays when you are swimming.

TR:

These early lessons in the ability to make something accessible played a role in his education and future.

After not being accepted in a mainstream school , Ahmet watched as his peers went to school at around 6 years old.

Moving to Istanbul his parents tried to enroll him in the only school for blind children. With a waiting list Ahmet wouldn’t begin until he was 8 years old.

Attending school during the week and returning home on weekends, Ahmet credits this school with teaching him valuable life skills.
After 5th grade he would attend a mainstream school.

Ahmet:
They send you back to mainstream school with no support. So you go back to school with no books and no teachers for the blind.

I was the first blind student in the school. I had to prove myself as a blind person.

TR:

At an early age, Ahmet took his education and future into his own hands.

Ahmet:
I was walking around with my Walkman and asking everybody you know, can you read me a page or two.

[TR in conversation with Ahmet]

So you were basically learning to advocate for yourself at that young age?

Ahmet:

Oh yeah I mean absolutely I mean there was nobody to advocate for me.
I could choose to sit around and do nothing you know get a C and pass, but if I really do well then people and teachers and you know the principal will understand that I can do stuff and they will let me stay. And if I cannot do it
I will just withdrawal myself.

TR:
Ahmet when on to not only prove himself to the administration but gain the confidence in his own abilities.

He studied Psychology in college where he met his wife, a US exchange student.

But his early life exposed him to more than academics

Ahmet:

When I was in high school my school campus was right on the water, you can literally jump into the water from the campus.

[TR in conversation with Ahmet]

So is that where the kayaking came in, from high school.

Ahmet:
No actually I did a lot of you know water related activities since my childhood as I grew up by Black Sea.

When I was in college I use to go rowing and stuff, but I haven’t started kayaking until I came here.

TR:
A Kayak is a very narrow boat like vessel. You steer and move the kayak with a paddle that has a blade on each end. They average about 25 to 35 inches wide and 12 to 19 feet in length.

Ahmet:

So let’s say you have a kayak nineteen foot long and twenty eight inch wide. You can go really fast but it will be a little tippy.

If it is twelve feet long and thirty five inches wide it will be really stable but you will go half as fast as the nineteen foot one.

It’s made of either corrugated plastic or fiber glass, there are some inflatable models.
So you sit in it. And you’re like really close to the water if you put
your hand your right there the water is right there. So you’re like maybe four inches above the water.

And you have a spray skirt which covers the kayak. So if you have a splash water doesn’t get in and if you flip over you are upside down but know water gets in.
So you have to pull the skirt off the kayak and get out of the kayak and flip it over and get back in. Or you can do the special row it’s called Eskimo row. Without pulling the skirt off you can flip the kayak back and keep paddling.

If you go paddling in cold water like San Francisco the water temperature goes below fifty degrees most of the time. So you don’t want to stay in that water more than 15 minutes. If you stay more than 15 minutes they say Hypothermia kicks in.

TR:

So what does Kayaking have to do with the Holman Prize?

[Audio from Ahmet’s Ambition]

You’re listening to Ahmet’s Holman Prize Ambition video where he explains what he would do with the 25 grand.

[Ahmet in Video……]

I have been kayaking for about 10 years and I always wanted to be able to paddle independently. If I win the Holman Prize I will equip my kayak with high and low tech devices that will enable me to navigate the kayak by myself.

TR:
His mission…

[Ahmet in video…]
My dream is to be the first blind person to paddle from Europe to Asia by crossing the Bosporus Straits.

TR:
You heard him correctly…
[Audio: Tape rewinding ]

[Ahmet in video…]
My dream is to be the first blind person to paddle from Europe to Asia by crossing the Bosporus Straits.

TR:
Exactly what is required for someone to non visually, independently navigate their way through the Bosporus Straits from Europe to Asia?

Let’s start with the Kayak

Ahmet:
The kayak I’m going to use has kind of like fins going down from the bottom of the kayak kind of like penguin feet. And so you can pedal with your feet if you want or you can just do a classical paddle strokes.

I want to keep my hands free because I’m going to use whole bunch of different technologies.

TR:

No surprise here the technology includes an iPhone.
Ahmet:

I’m going to use a G.P.S. app – Ariadni G.P.S.

You can mark way points and it will let you know when you get close to that way point.

It also has a compass with degrees and tell you how far you are from your way points. And then I have a talking audible compass. Similar thing it will tell you degrees and you will set you course before you start and it will tell you if you are off course.

[TR in conversation with Ahmet]
and you will South your course before you start and it will tell you the field

Is that a separate device or is that an app?

Ahmet:

It’s a separate devise.

I will also have parking sensors or security cameras sensors.

[TR in conversation with Ahmet]
Probably the same thing they use when the cars park themselves… right?

Ahmet:

Right, right right! You know when you’re backing out so if you are about to hit something it beeps.

I have a depth whisperer.

[TR in conversation with Ahmet]

D E P T H?.

Ahmet:
Yes.

[TR in conversation with Ahmet]

Ok at first I thought you said death (laughs) I was like I don’t like that one!

Ahmet:
Laughs… I hope not!

It tell you if there’s shallow water underneath the kayak. If you are about to hit a rock or something .

TR:

Ahmet does have to prepare for all scenarios.

There’s redundancy in his technology so if one device fails another can provide the same or just as useful information.

Not all the technology is off the shelf. While searching for the best methods for non-visually navigating his way through the water Ahmet
came across Marty Stone.

Marty is an AT&T I.T. Project Manager by day and after hours…

Marty:

I’m just one of those people that like to tinker with things.

TR:
Marty created a device that simply put:

Marty:
It was developed to allow blind people to get a kayak and race it in a straight line and then turn around and come back.

TR:

Reading about this device, Ahmet reached out to Marty who decided to expand on the original design.

Marty:
Now we’re working on something that not only includes a compass but gyroscopes, accelerometers, and three different axis.

So you get a lot better information as far as movement and heading. We’ve got a G.P.S. module that’s it’s married to along with Bluetooth. That’s going to be interfaced with a device Ahmet will be able to wear on his life vest that will have some buttons that either he can program in some coordinates or commands to the system that he’ll just wear a headset and it’ll talk to him.
It’ll tell him that in order to get from where he is to his next way point he needs to row in a certain heading direction. And if he gets off course the system will tell him to paddle more on the left or paddle more on the right. And when he gets to a way point it will let him know and then he needs to change his heading to another course direction and then it’ll tell him that.

TR:
With both equipment and technology accounted for, Ahmet needs a few more things to be fully prepared to reach his goal; first a plan..

Ahmet:
Istanbul is a city on both continents. And we have this Bosporus Strait that separates the city into two different parts. And the area I’m going to cross is about three, three and a half miles which is not a big physical challenge, but it has heavy traffic.

A lot of ships like tankers, containers, fishing boats, tourist boats, sailing boats you know all kinds of stuff.

These tankers are the size of multiple football fields. A small kayak would probably go unnoticed anywhere near such a large vessel. And getting out of the way even if you could see it would be virtually impossible.

Ahmet:
I don’t want to take my chance with those guys!

TR:
The Bosporus being such a very narrow waterway. Authorities closely control the traffic flow in each direction.

Ahmet:

I will listen to the traffic channel. Usually they have half an hour or forty-five minute break in between and I will do my crossing during that time.

[TR in conversation with Ahmet]
Do you have to schedule this?

Ahmet:

Well, I talked to the Coast Guard in Turkey and they .. first they didn’t believe that I could do it and I showed my videos to them and they said ok do whatever, we don’t take any responsibility.
(Ahmet and TR Laugh)

There will be a really fast boat watching me from the shore. If something goes wrong they will come and pick me up in like few minutes.

I’m not worried about the physical challenge – I can paddle you know three miles right now, no big deal. Being an expert using the technology if the key because I don’t want to have hesitation right in the middle of the shipping channel you know. That could be fatal.

[TR in conversation with Ahmet]

Why are you doing this man?

Ahmet:

I always loved the water, it’s my happy place. It’s the place I feel good about myself I feel free. I grew up in a fishing boat when I was a kid. My father was a fisherman. In the fishing boats I used to ask my Dad, you know can I steer the boat. he said yeh, you know, it’s water there’s nothing around you, it’s like miles and miles of open water. I used to take the steering wheel and just feel like I was the captain of the boat. And I was imagining like how can do something like this as a blind person as a blind kid. I always wanted to do something water related but my option were very limited in college.
If I grew up in the US I would have probably do something like marine biology.

I love what I am doing right now, I’m teaching special ed. It was always somewhere in my mind to do something water related and being able to do it independently. I have been thinking about it for a long time and I thought you know, it’s doable if I have the financial support I can do it.

TR:
I believe him. And I will admit it, partially because he is a fellow Retinoblastoma Survivor but mainly because he began as a child.
Think about the early lessons from his family helping him adapt all the different activities so he could participate…

[Audio in flashback Ahmet]

Ride a bike… tie hooks on a fishing line… avoid Sting Rays when you are swimming.

TR:
Then becoming his own advocate at such a young age and showing such determination to get an education.

I imagine these are some of the qualities seen by the Holman Prize judges who awarded Ahmet the 25 thousand dollars to complete his objective.

Ahmet:

You know, I’m not saving the world or I’m not creating job opportunities or changing the lives of blind people , but I think I’m doing something cool!

At least it might encourage younger kids to try new things. I see that my students, high school kids, they get discouraged in terms of finding alternative ways… I think it will help.

Everything could be adapted. Everything could be more accessible, that’s what I want to show. I don’t want it to be a success story of one person … he’s blind but he did that, he did this. It doesn’t mean anything you know one person did this.

[TR in conversation with Ahmet]

It’s cool, you focus on kids, you’re a teacher so that’s what you do, but for anyone, you’re pursuing your passion and that’s something that we forget in life. To be able to say you’re going to go and pursue your passion and have a dream and do it that is a universal thing that goes way beyond any sort of disability. There are people who are perfectly sighted, physical abled who are not pursuing their passion and we can all learn from that.

Ahmet:
Absolutely, yeh, I mean you know, it’s not a blind or sighted thing. It’s just I think being adventurous and take a risk take a chance.

TR:

That’s probably the final ingredient necessary to complete this mission. courage!

As a young boy on the fishing boat with his Dad, Ahmet dreamt of becoming the captain. It takes real courage to go for your dreams. I’d say Ahmet’s been captain of his ship for quite some time.

If you’re interested in wishing Ahmet safe travels or want to follow his progress, go and Like his Facebook page; Ahmet The Blind captain.

I’m Thomas Reid for Gatewave Radio,
[Audio repurposed: Ahmet ” do whatever, we don’t take any responsibility! ]

audio for independent living!

[Audio: Grand Funk Railroad… The Captain]

TR:
Being affected by the lack of accessibility is frustrating. Especially when you know the so called limitation isn’t real.

It could be a website or program that doesn’t work with a screen reader. That was a choice. Probably not an intentional one, but if made aware of the problem and
a solution isn’t sought well, that’s intentional.

Companies usually fall back on the cost and yes there could be a cost to updating a product, but there’s no real cost to changing how we think and design for the future.

Inaccessibility is frustrating when you know that the reason for technology is to make our lives better.

That was one of the reasons I wanted to reach out to Marty Stone, the developer creating an enhanced device to help Ahmet stay the course.

Marty:
You can never accuse me of being an optimistic person I’m afraid, but I do hope that we can save the world with science, I really do. The world needs a lot of help and a lot of people really don’t trust science or scientist it’s kind of shameful.

[TR in conversation with Marty]
This is what technology is all about.

Marty:
Helping people…

[TR in conversation with Marty]

Yes!

Marty:
Absolutely, the stuff I do for AT&T is great and all that but doing this other stuff… this is the best stuff in the world. Volunteering and doing this other work. Taking some of that Geek ology and helping other people’s lives.. make them better. Man that’s just the dandiest thing in the world.

TR:
We need more of a bridge between the users of technology and the programmers, engineers, scientists … nerds.
Marty:
It’s cool to be a nerd now, yeh…. laughs.

TR:

The opportunity to profile Ahmet and his story came at the right time for me personally.
For the past few years, September has been a pretty busy time here on the Reid Compound.
As a survivor and a family impacted by Retinoblastoma, my family and I have spent the past few years telling stories to bring awareness of this childhood cancer.

September is childhood cancer awareness month. This year unfortunately we couldn’t produce the stories so being able to bring you Ahmet and drop a little info about this eye cancer means a lot to me personally.

In fact, I’d encourage you to check out some of the prior videos we have produced and see how the cancer impacted their lives. While these are videos the visuals included are enhancements, the story is told verbally.
I’ll have some links on this episode’s post on ReidMyMind.com.

I’m always hopeful that a story like Ahmet’s when presented in the mainstream media is done the right way. By that I mean, find and convey his message to the wider audience. In addition to the accessibility and self-advocacy I’m always personally encouraged when I see others going for their dream.

Ahmet was already preparing for the dream. He just needed the funding. His fortune, the San Francisco Lighthouse created the opportunity. Ahmet was prepared. Some say that’s the definition of luck… being prepared for opportunity

That’s another take away for me, be prepared for that opportunity. Begin moving towards your dream.

I hope the Holman Prize winners; Ahmet and Penny are encouraging you the listener to go for your dream if you’re not already.

I hope they’re encouraging you to subscribe to this podcast just
about anywhere podcasts are distributed… Apple Podcast, Google Play, Stitcher, Tune In and Sound Cloud

The world is going to be buzzing with this next episode, featuring
the final Holman Prize winner. Don’t miss it.

Peace

Hide the transcript

PennyPushUps is now The RAE of Hope

Saturday, September 10th, 2016

PennyPushUps since 2013 has been my family’s awareness and fundraising campaign to spread information about Retinoblastoma, the childhood eye cancer that is responsible for my loss of both my eyes.

As the parent of a RB survivor it seemed right to try and do something to spread awareness.

 

The original idea was pretty straight forward; I’ll complete 100 push-ups a day and you sponsor me like a walk-a-thon just 1 cent per push-up… do the math!

 

The campaign turned into us sharing our story as well as others impacted by the cancer. Probably not a shock considering I enjoy telling people’s stories. The shock was I thought I could easily do this on video. Fortunately, I wasn’t 100 percent wrong. (Non visual video editing is possible… I do it!) Even more fortunately, my wife thought she could do a better job at the video production. She was right and she began to earn her keep and her name… Super Producer Marley Marl now formally known as Super Producer Marlett!

 

It became apparent that people weren’t really interested in my push-ups. One of the comments on the videos went something like; “Really interesting and important but why is there a guy doing push-ups.” LOL! I guess they didn’t listen to the introduction which summarized everything I just said about the campaign.

 

Logo for The RAE of Hope - a beam of light shining on to the earth from space

Focusing on raising awareness & empowering others while raising funds for World Eye Cancer Hope the name sort of wrote itself when we let the universe take over… The RAE of Hope, “Shining a light on a childhood eye cancer”.

 

We just finished airing our first full week of videos. We post them to our Facebook page “The RAE of Hope” and via YouTube.

 

I would love for you to come on over and “Like” our FB page or follow us on twitter @TheRAEofHope. The stories this year feature a bit more in the way of video production but the full story is told via audio. In fact, this year we incorporated closed captions available via YouTube, so we’re fully accessible – the way it should be!

 

Below is our playlist of all our videos so if this works properly you could pretty much bookmark this post and watch the latest video as we move through the month. We post new videos every Monday, Wednesday and Friday.

 

Tell a friend and help us spread the word about Childhood Cancer it can truly save a life and sight!

 

Reid My Mind Radio: Cradle – The Cancer Detecting Smart Phone App

Wednesday, February 24th, 2016

“You make something, it works very well and then you just give it away, as quickly as possible”

– Bryan Shaw

 

Bryan Shaw, after watching his child survive Retinoblastoma or Eye Cancer, develops an app that is already saving lives and sight in children.

 

In this piece for Gatewave Radio and even more included on the RMM Radio version, you will hear all about this Professor’s story and how personal tragedy led to a life changing app.

 

Get the APP on ITunes

Get the App on Google Play

 

Play the story!

 

Resources:

 

“Cheap, functional, reliable things unleash the creativity of people who then build stuff that you could not imagine” – George Whitesides

 

George Whitesides – TED Talk

 

For more on the white eye…Know the Glow

Learn more about those impacted by Retinoblastoma:

 

A Holiday Message to Save Lives and Sight

Wednesday, December 23rd, 2015

More children are diagnosed with Retinoblastoma or eye cancer between the months of December and March. The reason; the holiday season is the time of year when more pictures are taken and seen. The white glow seen in a child’s eye can be an indication of the eye cancer. This video from World Eye Cancer Hope is a quick message to help educate the public. All we need is your help to spread the word. Thanks to WEChope’s Abby White and Super Producer Marlett for all their work putting this together. The photos in the video are of real children and families impacted by Retinoblastoma.

 

Reid My Mind Radio: Jake Olson – It’s A Snap!

Wednesday, November 18th, 2015

During the month of September while I was fully focused on #PennyPushUps2015; the Reid Family’s Fundraiser and Awareness Campaign supporting children with eye cancer, a related story almost slipped past my radar. I received an email about the story of a USC Long Snapper who was blind. The sender suggested I should feature this individual on Gatewave Radio.

 

I moved the email to my Gatewave folder and made a mental note to research the story further once I could focus more, i.e. after September.

Well, it just so happens that this young man is a retinoblastoma survivor himself.

Check out this latest story for Gatewave Radio featuring Jake Olson.

I included a little something extra for the Reid My Mind Radio version so make sure you listen through.

 

 

For More information:

Retinoblastoma

Swim with Mike Scholarship

USC Trojans