Help Twins with DMD Communicate With The Outside World

For: The Lads: Joe and Ben Styles
Organizer: Freddie Feldman
$7,770
of $6,000 goal
100% Complete
Raised by 72 donors
This fundraiser is closed. Thank you for your support!

The Story

My name is Freddie Feldman I am an engineer, musician, and inventor of a throat microphone I designed for beatboxers back in 1999 called The Thumper. A woman named Jenny Parkes in Ireland found my Kickstarter project (to develop new model of my mic) 2 years ago and asked if I could make a special throat mic for Ben and Joe (we call them "the Lads").

The Lads have Duchenne Muscular Dystrophy, a debilitating condition that has mostly paralyzed them and requires them to be on BiPAP breathing machines for most of the day. While wearing their breathing masks, it is difficult to wear a regular headset to Skype and dictate. Their minds work perfectly well, but they are essentially blocked from communicating while on this form of life-support.

I can definitely build microphones for the Lads, but I cannot just ship them "across the pond" to the UK and hope they work. I need to travel there from Chicago and work with them for a few days, tweaking the design and the programming of the microphones to work for their unique situation.

I am doing my best to contribute what I can as well. During this fundraising campaign, I will contribute all profits from sales of Thumper throat mics to this project. Anything you are able to contribute, as a gift to the Lads, would be amazing. They are now 27 years old and have outlived their diagnosis by many years. They are fighters and an inspiration. 

THE PLAN/SCHEDULE

January 20th - April 1st, 2014: Fundraise using YouCaring.com
April 23rd - April 27th, 2014: Freddie and Sam (camera man) will fly to Preston, UK, where the Lads currently live, armed with two custom-built throat mics, testing equipment, tools, and get them going with their new gear.

GOALS

We've raised our minimum goal of $3000!! This will go towards:
  • building two custom-built throat microphones for the Lads
  • extra throat straps (5 for each lad)
  • purchase of Philips Swift LT nose-pillow mask and tubing (for testing)
  • Freddie's travel/lodging from Chicago to Preston, UK in April 2014
Once we raise $6000, we will be able to:
  • fly Jenny Parkes in from Ireland to work with us
  • purchase new copies of Dragon Dictate for the Lads' computers
  • build two prototypes of the new "SIMBA" microphone I've invented for the Lads, as well as others with muscle disease, to use. This is a different type of microphone from the throat microphone I have built for them.
  • travel for our camera man, Sam, plus rent/purchase video equipment (video lights, harddrive) for filming everything for a video we're producing about The Lads Project.

MORE INFO/LINKS

Fundraiser Updates

Posted on April 11, 2014

Posted on April 11, 2014

WE LEAVE IN TEN DAYS!
A couple weeks ago, I booked my flights from Chicago to Manchester for April 22-27 and for Sam from NYC to Manchester. I did go for the travel insurance, in case there’s some emergency here.


TESTING NEW MASKS
Philips sent a couple of their newest “Nuance" masks for me to try out. They will also be sending these masks to the Lads, hopefully they’ll get them before I get there. Obviously, the best thing is to not have to use a ventilator at all, but if you have to wear a mask most of the day…these Nuance masks are probably the sleekest, most comfortable masks you’re going to find. 

My contact at Philips UK has also passed on the info about the project to their international PR team in the US, so see if they’d be able/interested to contribute anything to the project. I haven’t heard anything back yet though. 


THROAT MIC PROBLEMS
For this project, I ordered my customized throat microphones from my manufacturer six weeks before the trip to the UK. Typically, it takes them about 2 weeks to build and ship the mics to me, so I figured that would give me about a month to work with them before giving them to the Lads. After waiting two weeks, I checked on the order and found it still had not gone through. After a couple more weeks of nagging, I finally got an answer out of the company and they told me they can no longer supply me with my customized mics that they had been supplying me for the past 8 years. WOMP WOMMMMP. This will be a bit of a problem for the Lads Project. 

The manufacturer has assured me they will get me a suitable replacement early next week (only 1 week before I leave!!) but that’s cutting it very close. As a back up, I have purchased some different types of mics that will work with my Thumper belt-pack DSP unit and we will experiment when I get to the UK. A throat microphone might not be the best solution for the Lads and this hiccup has shown me that we need to explore all the alternatives.

If you know anyone that would be interested/able to contribute anything to this project. Please send them to the funding page! We’re VERY close!

—> freddie

Posted on March 8, 2014

Posted on March 8, 2014

Fundraising Update
We’ve raised just over $4000 so far, which is AMAZING. Thank you again to everyone who has contributed money and/or time in getting the word out. Every time a contribution comes in, I get an email and I get very excited. We’ve still got a way to go, but there is another month left! Last week I was at the SingStrong DC, an a cappella festival I help produce that raises money for the Alzheimer’s Association, and I had some excellent conversations with people that are very interested in helping out on the project. I also met with Sam, the cameraman, and we discussed the project and our upcoming trip.


Finalizing Travel Plans
Sam and I have been working to get our travel over from the US finalized. I am flying in from Chicago and Sam from New York City, so there’s some coordination that has to happen so we get to Manchester near the same time. We’re also learning that when traveling from the US to the UK for a short trip, you get snagged with some of the lesser expensive flights because they have some long layovers, cutting into the time you will actually be in the UK. 


Philip Home Respiratory Care Promotional Video
The Lads have switched to a newer ventilator by Philips called the Trilogy 100 and recently shot a very nice promotional video for them. This new ventilator is smaller and easier to use than their previous machines, plus they get to use a much better mask that doesn’t cover their whole face. When I first watched the video, I was excited about their new setup and the freedom it will give him. The Lads have assured me that they still indeed need my throat mics, as it is still difficult to talk/dictate for any duration of time without getting exhausted. The throat mics will allow them to talk with less effort and do it for longer periods of time.

Check it out, I think they did a great job!
http://www.youtube.com/watch?v=tRkNUl8LBs0


Test Run of Throat Mic Over Skype
I’m planning to do the Skype call with the Lads this coming week using my throat microphone. I’ve now completely reprogrammed the Thumper TH100 throat mic and have adjusted the DSP programming for better noise-reduction and optimizing it for speech. When we do the online test, I’ll try to record the Skype call directly on my computer as well, so that we have practice doing that for when I go visit the Lads in the UK.

Keep spreading the word, we’re getting closer!!

—> freddie

Posted on February 4, 2014

Posted on February 4, 2014

FUNDING UPDATE
We have now completed our second week of fundraising and we’re up to $3,464 and 255 likes on our funding page (if only "likes" were worth $5 each, eh?). Thank you SO much to all the contributors & supporters so far. There are a lot of people reposting, sharing, emailing the link around and we’re getting some great responses. We received one particularly large contribution from Kunal Ambasana in Birmingham UK last week of $2000. Amazing! Kunal is a performer that beatboxes and plays didjeridoo at the same time. He owns 2 Thumper throat mics too (a TH75 and a TH100). Kunal, when I spoke with the Lads last week, they asked me to thank you directly for your generous contribution. Thank you!!

SKYPE CALL WITH THE LADSI had a Skype video call with the Lads and we discussed their health, their upcoming move, and their new equipment. They are currently in Fleetwood, but by the time I get out there in April they will have moved to Ashton, near Preston. It’s easier and closer to their hospital. They did mention that since moving from Ireland to England, their health has improved dramatically. The treatment they were getting in Ireland was not working for them and the move away basically saved their lives. They are also on new BiPAP machines and smaller face masks from Philips and recently shot a promotional video for Philips that will be shown at a conference very soon.

I've promised the Lads we’ll have another video call with them in a couple weeks and this time I’ll be using a throat mic on my end. This way, they can hear what it will sound like. I will try to record the Skype call for practice too so we’ll be able to record some calls when I visit them. I’m still waiting on a BiPAP machine to test with here, but Joe did give me this warning: "Be careful experimenting with the ventilator machine, set it on it’s very lowest setting or you’ll feel like your lungs are going to explode." WHOA.

THE LADS PROJECT VIDEO
My buddy Sam Nulton and I have been discussing the project for a while and he’s now on board to travel with me (from New York City) to shoot the whole thing for a video we will release after the trip. Sam is a camera operator for SportsNet NY, Bloomberg News, and MSG. You probably saw of his camera work this past week during the “Super Bowl Week” coverage in Time Square. Sam also happens to be our amazing lighting designer for the SingStrong a cappella festival.

About the Organizer

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