SPARK THERAPEUTICS AND LUXTURNA COULD MAKE HISTORY TODAY!

BIG NEWS! Today the FDA will have a hearing with Spark Therapeutics on Luxturna, a new gene therapy, that has the potential to treat LCA!

At Two Blind Brothers we donate 100% of our profits to researchers and the Foundation Fighting Blindness (FFB) to find cures to blindness, and today we just got one step closer to our goal. In a World Sight Day miracle, a U.S. Food and Drug Administration (FDA) advisory panel met to vote on whether or not to recommend Luxturna, a gene therapy developed by Spark Therapeutics that could restore vision for people with Leber’s congenital amaurosis (LCA), to the FDA for approval. It’s expected that the panel will give this treatment the greenlight.

SO, WAIT…WHAT IS LUXTURNA AND HOW DOES IT WORK?

Luxturna is the trademarked name for Spark Therapeutics’ “Voretigene Neparvovec” gene therapy. Don’t worry if you’ve never heard of that term before, neither had we.

It’s just their technical term for the gene therapy that corrects the inherited mutated LCA-causing gene, i.e. the bad version. How? By injecting a copy of the unmutated, or normal version, of the gene directly into the retina.

Ouch! That sounds painful! Don’t worry Luxturna is meant to be a one-time treatment and as they say, no pain, no gain.

WHY THE EXCITEMENT?

LCA is an inherited retinal disease that causes vision loss at an early age due to a mutation on the RPE65 gene. It affects about 3,000 people in the United States and there is currently no approved treatment for this condition. This gene therapy doesn’t just delay loss of sight but it can actually improve it. Just imagine what this could mean for those with LCA? Joy for starters. People from the clinical trials spoke of seeing their mother’s face for the first time, seeing stars in the night sky, and seeing snow and rain falling.

FFB’s new CEO Dr. Ben Yerxa also marvels at what a difference this treatment could make, if approved. He said, “This is a therapy that really improves vision…that is a remarkable thing. That shows us it’s possible… that if we have the right target and the right approach we can make a huge difference on peoples’ vision.”

WHERE DO YOU AND TWO BLIND BROTHERS FIT IN?

It is important to us that everyone understands the tangible effect of buying our shirts. The funds from Two Blind Brothers are driving life-changing treatments like this one. When you buy our shirts you become part of the cure. Our goal is to find those researchers who have a great hypothesis, a little bit of a proof of concept and who are trying to get ready for a clinical trial. We fund promising early clinical work that others don’t always have the temerity or money to do so. We want to give these projects wings to get going. Some of the early research for Spark’s therapy was funded by the Foundation Fighting Blindness, an organization we work very closely with.

WHAT ARE THE NEXT STEPS?

While today’s vote is non-binding, meaning that the FDA does not have to follow the recommendations of the advisory committee, it generally does heed their guidance. The advisory panel is expected to give their two thumbs up. The FDA will then have until January 12, 2018 to give a final ruling. If (and hopefully once) approved, discussions around pricing begin.

 

Let’s go for goal!

Sense of Style: Touchdown in the Ellen

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It’s football season and you know what that means...time to tailgate in Two Blind Brothers style. 

In one of our recent style guides, we put together the perfect back to school outfit for your first day of classes. But we know being in college isn’t all about class (still, hit those books kids). During the fall at many big schools across the country there is no bigger social activity than football. Come Saturday it’s time to tailgate and fill up on good food and good fun before kickoff. So we thought, “why not put together an outfit for a tailgate?” This look is UVA centric, obviously (because we’re loyal alum), but with a simple tweak or two, it’s the perfect outfit for any autumn event.

Not in college anymore? Not to worry, this is a great look to for fall alum events when you want wear your college colors (and in some cases, pretend like you’re back in school)...for example, when supporting your dear Cavaliers from afar perhaps.

As always, this look starts with one of our amazingly comfortable Two Blind Brothers’ shirts. This week, the Ellen is on full display. The soft white v-neck is one of our favorites. Don’t worry too much about spilling wing sauce on it, TBB shirts wash off notoriously well. A reliable pair of light blue jeans will do the trick. As of now, the high waist is still in, so go for it if you have a pair.

The heart of this look is all in the accessories. A pumpkin orange bag will hold your belongings during the game or it will just give the look an extra burst of color. It is starting to cool down, so we included a really fun scarf in this look. A pattern design will probably be your best bet for adding another dimension to this look. Try and stick with some browns and oranges for the designs, blue is a nice compliment as well. The crown jewel of this outfit is a pair of UVA smoking slippers, we understand if you don’t have a pair laying around, but if you do, throw ‘em on and show off your college pride! Wahoowa!

Shop the look here:

https://twoblindbrothers.com/womens/the-ellen

Sense of Style: Head Back to School in Style with Help from the Diane

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Well folks, summer is officially over. Labor Day has come and gone and fall will soon be in full swing. Autumn brings many wonderful gifts: the leaves change, pumpkin spice coffee is everywhere you look, and the big kicker… school is back in session. We know that the first day of classes can come with a lot of nerves, so we picked out the perfect back to school TBB look so there’d be one less thing for you to worry about.

Start your semester off looking smart and stylish in one of our staples, the Diane. This solid long sleeve look will keep you warm as the weather begins to cool. We recommend rocking it with a denim skirt. We’re big fans of the full button front. If it’s already a little chilly, a pair of jeans or your favorite fall boots will do the trick as well.

It’s important to accessorize with some splashes of color. A brown braided belt is the perfect intersection for this blue-hue look. Don’t be afraid to go big or go home (do try and go to class though). You can’t go wrong with some creative earrings that add a bit of a pop. While the weather is fair, a pair of blue flats will be cute and handy walking around campus looking for your lecture halls - we recommend these waterproof ones which are particularly handy in case the weather changes on you as quick as the seasons!.

Swing on your backpack or tote, grab your books, and head out the door. You’re ready for school!

You can shop the full look here:

https://twoblindbrothers.com/womens/the-diane



 

Sense of Style: Squeeze out that last bit of summer before we fall into autumn in the Dee Dee

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The sun’s no longer sweltering. Temperatures are dropping. The air is getting crisper which means fall is right around the corner, but it’s not here quite yet.Looking for something to wear for the unofficial last weekend of summer? We’ve got you covered: The Dee Dee is the perfect segue piece to debut your fall colors with a summer vibe.

Ahead of Labor Day, we love the Dee Dee with a pair of jean cut-off shorts over your favorite bathing suit. We chose a white and green bikini, so you can show off your tan before it fades as fast as summer.   

It’s the perfect transitional outfit - summer to fall, day to night.  It wicks away water so it works on the boat or the beach and it’ll dry in time for sunset. Also its  breathability will keep you cool during the day (perfect under the summer sun or in front of the grill) but it’ll also keep you warm at night, so roll up those sleeves (or roll’em down).

Labor Day is a long weekend so you need to be comfortable on your feet, with a little splash of fancy so we recommend dressing it up with your favorite espadrilles. You don’t want to wear heels to the BBQ because we all know backyards are the suburban equivalent to quicksand to a lady in stilettos.

This is your window of opportunity to pair a long sleeve shirt with shorts - they only coexist during this It’s-not-really-summer-but-not-quite-fall twilight zone.

Want to take this look to the next level? Or simply don’t want to overpack? Switch out the shorts for a pair of jeans and unroll those sleeves for a night out on the town.

Afterall, saying goodbye to summer is never easy, but it’s easier in a Two Blind Brothers shirt.

Shop the look here:

https://twoblindbrothers.com/womens/the-dee-dee

Why being blind can make you a better cook

Being blind can give you an advantage in the kitchen, here's why:

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To be a better cook organize your kitchen and sharpen the senses often overlooked in cooking: hearing, touch and smell. Cooks with visual impairments know this better than anyone - and even the New York Times agrees (don’t believe us? Read their article here: To become a better cook sharpen your senses)

According to David Linden, a neurobiologist at Johns Hopkins university “hearing and touch become more acute in the absence of sight.” We’re already used to relying on our other senses more than our sight, and doing so in the kitchen is only natural.

Visually impaired cooks also tend to be very organized in the kitchen to make things easier to find. Without sight, we can’t exactly see things that are in the way. To the visually impaired misplaced items can be obstacles to a perfectly timed meal and not just inconveniences.

So many important kitchen cues have nothing to do with sight: the fine line between a simmer and a boil is a sound. The difference between medium-rare and well done is the sensitivity of a touch. Yes, sharpening your senses and keeping an organized kitchen can be workarounds for the visually impaired, but really they should be essentials for anyone who wants to become a better cook, sighted or not, the only difference is that we already do them.

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TOUCH

We’ve shown you how easy it is to test how well done your steak is just by using the palm of your hand and a finger. You can also use your sense of touch to measure spices and herbs – a pinch of this or a pinch of that is usually the equivalent of 1/8 of a teaspoon, a handful is roughly the same as 1 cup – or to determine the rice-to-water ratio. You can use your fingers to tell how much water you’ve placed in a pot. When you’re boiling potatoes, the water should just about cover them - you don’t need good sight to feel the level of the water. Touch will tell you if your tomato is mealy, your peaches are bruised, your zucchini is limp or your spinach is slimy.  

 

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HEARING

Food when it hits the pan makes a different sound depending on how hot the pan is - if it’s hot enough you’ll hear the hiss, if it’s not, maybe you’ll just hear a plop.  You can use your sense of hearing to listen for the sizzle or hiss of water or olive oil (or if you’re unlucky, touch will tell you when it skites out at you). The toaster makes a pop when the bread is ready, the kettle whistles when your water is boiled. You can hear liquid bubbling when it boils, or alternatively hear the spits if it boils over.

Author and renowned patissier Kate McDermott insists you can hear when a pie is perfectly baked by listening for the “sizzle-whump”: The sizzle referring to the sound hot butter makes as it cooks the flour in the crust and the whump referring to the sound the pie filling makes as it bubbles up against the crust on top.

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SMELL

First let’s start with the obvious you can smell burnt cookies and the smoke from your overcooked chicken, but you can also smell when garlic becomes aromatic in a pan. You can smell when your apple pie is almost done. You can smell when your milk has gone sour or your mushrooms have gone bad. A lot of times with curries, you can actually smell if it’s going to be unbearably spicy. If you make the unfortunate mistake of putting too much hot sauce in your dish, you can smell that too (and actually, you’ll probably also feel the burn in your nose).

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CLUTTER

We tend to keep more organized kitchens as a result of our visual impairments. When you can’t see well you need to know where things are, especially in the kitchen, because a misplaced item, such as a knife, can often be more hazardous for us if it’s not where it should be. Clutter is the enemy of the blind and in the kitchen it tends to build on itself - your eggs have burnt by the time you find the spatula, or suppose your sharp knife is in with your forks and face-up instead of in the knife block where it should be; so now not only has your perfectly medium-rare steak overcooked because you couldn’t find the knife, but you’ve also managed to prick your finger on the blade in the process.

Instead of enjoying a juicy steak you’re left with a band-aid on your finger, a turkey baster, a garlic press and, your non-stick whisk scattered on your cutting board where that steak should be.

But clutter is also enemy of the good cook, no matter how well they see. Those who are visually impaired tend to have uber-organized kitchens so things are easier find when you can’t see well and that can give us an advantage.  

Ditus Arizona: "Arizona Enriches"

Did you know?

Arizona’s state motto is Ditat Deus - Latin for “God Enriches” - but in this case it’s Arizona that enriches. Arizona’s BEP program is enriching the lives of the visually impaired community by providing them a chance to own their own businesses. 

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What’s the deal?

The Arizona Business Enterprise Program (BEP) is program geared at providing employment opportunities to people who are legally blind in the food services sector: if you are eligible you can operate cafeterias or vending services in federal, state, county or municipal buildings.

Who can participate?

You can! (if you meet the following eligibility requirements):

  1. You are a client of the Vocational Rehabilitation program (more here: AZ VR Program)

  2. You are legally blind

  3. You are at least 18 years of age

  4. You are a US Citizen

  5. You are able to pass a criminal background and credit check

  6. You have a GED or High School Diploma and are able to pass competency exams for:

    1. 10th grade level math and English

    2. AT and IL proficiency

    3. Able to use Word, Excel, Email, and Accounting software

  7. You participate in job shadowing, meetings, and pass a BEP screening interview

  8. You complete an intensive 6 month unpaid training program

The program has been around now for a while but is currently expanding into the private sectors: new sectors = new opportunities!

It’s so inspiring to see other programs and companies like the Dallas Lighthouse for the Blind that help provide employment opportunities to the visually impaired community. Apparently it really is true that the more lives you enrich, the richer you’ll be.

Read more about it here :ABC15

Learn more about it here: BEP

 

Ojok Simon: A beecon of hope for the blind and visually impaired

I will prove to the whole world that being ‘out of sight’ does not mean ‘out of mind’
— Ojok Simon
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There is a saying: Give a man some honey and you feed him for a day, teach a man to beekeep and you feed him for a lifetime.

...Ok that may not be exactly how the original saying goes but it is exactly what Ojok Simon is trying to do in Uganda.

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Ojok Simon is a blind Honey Bee Keeper and he recently won San Francisco Lighthouse for the Blind’s first ever Holman Prize for Blind Ambition. Ojok plans to use the $25,000 prize towards funding the HIVE project in Uganda: a project that empowers the blind and visually impaired in rural Uganda to become independent and self-reliant by teaching them how to beekeep and providing them with hives. The award will make available 60 high quality equipment necessary for beekeeping and honey extraction, such as beehives and honey harvesting suits.

In its first year, the Holman prize is the brain-child of another great Lighthouse for the Blind - The San Francisco Lighthouse. The Holman Prize was created specifically for those who are legally blind and provides financial support for up to three people in their endeavors.

Who ever thought empowering others and curing blindness would taste this sweet (or feel this good)?

To Read more about Ojok and the Hive project see below:

Meet Ojok Simon: First Holman Prize Winner Ojok Simon

Learn more about the HIVE project here: HIVE Uganda

For more information on the Holman Prize see: First ever Holman Prize for Blind Ambition

 

You only need a Spark to start a fire...

Spark Therapeutics recently dropped a press release with some exciting developments in gene therapy treatments. However for the uninitiated, the report can be a little dense, so let’s break it down…

The big takeaway is that Spark has announced that they have submitted a Marketing Authorization Application (MAA) to the European Medicines Agency (EMA) for a one-time gene therapy treatment for patients with the degenerative retinal disease Leber congenital  amaurosis (LCA) or retinitis pigmentosa (RP). The trade name for this treatment will likely be LUXTURNA™.

On this side of the pond, the well known Food and Drug Administration (FDA) has the treatment under Priority Review, meaning we will hopefully be seeing it on the market sooner than later.

John Furey, the chief operating officer of Spark Therapeutics, stated, in regards to the near future, "For the first time, these individuals, who eventually will progress to complete blindness, have hope for a potential treatment option that may restore their vision.” These are exciting times.

This has been a long road, the first trials began in 2007, and before that many years of hard research and laboratory work were needed to get us to where we are today. The most recent trial took place between 2013 and 2015, involving 41 participants aged 4 to 44. For the most part, of those 41 participants, a majority showed significant improvement in sight when compared to the control group. Fortunately, no serious adverse effects were observed in participants who received the treatment. This is why Spark has been able to move forward with their research.

It is important to us that everyone understands the tangible effect of buying our shirts. Some of the early research for this therapy (since the early 1990s and up until the first clinical trial) was funded by the Foundation Fighting Blindness, an organization we work very closely with. So where does Two Blind Brothers fit in? Our goal is to find these researchers who have a great hypothesis, a little bit of a proof of concept and who are trying to get ready for a clinical trial. If we can find a healthcare venture fund or a biotech fund that can come in and fund all those expenses to get that therapy into a commercial space we have done our job by giving these projects wings to get going.

Without the generosity we see from all of you on a daily basis, things like this would not be possible. We are continually grateful to all of you. Let’s keep fighting together!