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BACK TO SCHOOL WITH BRONWEN STYLE

by Ashley Lodato

What’s a sure-fire trick to get your little (or big) girl excited about school starting in the fall? Appeal to her sense of style. And what better way to make a splash in the classroom than a sparkly new piece of kids’ jewelry from Bronwen’s Petite B collection of handmade jewelry?

kids jewelry

At Bronwen Jewelry, we know that girls are made of sugar & spice & everything nice…..as well as brains and strength and creativity and confidence. The days of girls sitting around embroidering and fingering their strings of pearls are over—today’s girls can be found on the sports field, on mountain peaks, running rivers, and climbing rocks, so they need bracelets and necklaces that accommodate these active lifestyles. Our active jewelry for kids is popular with girls of all ages (as well as with some boys!) and, truth be told, we’ve even seen some mamas eyeing their daughters’ bracelets and necklaces longingly.

Petite B for boys too

Whether your girl has her nose perpetually in a book, can’t put down the paintbrush, practically lives in her cleats or ballet shoes, or never met an animal she didn’t want to adopt, there’s something in our Petite B line for her. Surprise her with your choice of tiny charm necklace or let her pick it out herself. Stars, mermaids, fairies, hearts, magic wands, snowflakes…the only hard part will be settling on just one!

girls jewelry

Like our collection of active jewelry for women, our Petite B collection of featherlight and water-friendly charm necklaces stand up to the bath, the ocean, the soccer field, and the pool. They're also covered by our signature Bronwen lifetime repair/replace guarantee. These necklaces are designed to withstand your girl’s activities no matter how hard she plays. And as she grows, we’ll resize the necklaces to fit her.

petite girls jewelry

Complementing the Petite B charm necklaces are our Ribbon Wrap bracelets tailored for kids. The wrap consists of the same sumptuous silk ribbon and precious metal charms as the adult version, but it’s kid-sized and clasps with a whimsical heart-shaped pewter button clasp. Your girl can choose her favorite ribbon color from among a dozen options—rainbow! mango! hydrangea!—as well as selecting the length that will best suit her style. And she’ll love our cute new packaging, which features a Petite B model who dances, swims, skis, and loves to play in the mud just as much as any girl.

water jewelry kids

As we grow our Petite B line, we look to active girls for our inspiration in creating individual pieces. We watch them at school and at play, on the gym mats and deep in conversation. We note what they choose for back-to-school clothes at favorite stores like Hopscotch Kids and Stone Soup in Bend. We notice how girls use jewelry to reflect their personalities and define their individual senses of style. We aim to offer them a line of practical fashion jewelry that allows them to feel sparkly while still playing hard and adventuring to their hearts’ content.

water jewelry girls

And while you’re shopping for your daughter, don’t forget about the people who will help mold her into a confident, imaginative, and daring young woman. We’re pretty sure that teachers love Bronwen Jewelry just as much as little girls do.

           
Posted in Blog By Bronwen Jewelry
JEWELRY THAT ECLIPSES ALL OTHERS

By Ashley Lodato

For the past few months people all over the world have been mooning over the upcoming total solar eclipse, but at Bronwen Jewelry we have been crazy about the sun and moon for….well, pretty much since the beginning of Bronwen Jewelry!

First take the sun—that fiery sphere of glowing gasses that gives Earth its climate and weather. The sun brings us light and warmth. Its mystery and majesty give us a long tradition of solar idolatry. And it has long served as inspiration for Bronwen favorites like our Sunburst Necklace, our Sun Disc Rings, and our Sun Ray Ear Jacket. Oh, and did we mention our best selling curated piece, the Beaded Desert Sun Cuff?

beaded desert sun cuff Bronwen

You see, at Bronwen Jewelry we perceive the sun in many forms, and we use those perspectives to design sun-inspired jewelry that not only honors the giant star at the center of our solar system but which also honors the aesthetic you cultivate for your own image through accessories.

Ah, but with all this attention to the sun let’s not forget about the moon. Earth’s own and only natural satellite—cool, mysterious, always changing. At Bronwen Jewelry we’ve watched the moon rise full, illuminating the high desert. We’ve seen its shimmering reflection on alpine lakes and walked forest paths by its silvery light. We’re so enchanted by the moon’s gleaming color and mutable light that we just can’t stop designing artisan jewelry that pays homage to this incredible celestial body.

Our Callisto Necklace gives you a simple crescent moon on a water-friendly adjustable cord, while our best selling Tiny Charm Moonbeam is a textured variation on this crescent shape and is equally safe to wear in water. A more traditional sliver of arc moon can be found in our Tiny Charm Crescent Moon necklace, which is available in gold or silver and 9 cord colors to choose from.

Complement these lunar necklaces with our sweet Mixed Metal Moon Ring and Cascade Drop Earrings, which pairs a sterling silver band with a shiny brass moon. Or get elemental with any of our elegant moonstone pieces, like our , which feature laser-cut geometric chain and bezel-cut gemstones. And don’t miss our Rainbow Moonstone Necklace, whose soft palette of mixed metals on neutral synthetic cord belies its strength and durability.

Eclipse

If you have a starry-eyed little one, she will be delighted by our Petite B Shooting Star necklace and the Stardust Cuff will be as much of a standout on your wrist as the glowing cosmic dust is in the sky.

Our handmade Eclipse Necklace and Earrings have been selling so quickly for Eclipse 2017 we haven't even been able to get a proper picture to post on our website so you'll just have to come down and see them in person - our handmade jewelry is created in our downtown Bend studio, where we have both a retail space and a workshop in an airy, sunlit atelier. We’re committed to producing our pieces in the USA and we source all of our materials through fair trade methods. At Bronwen, we’re equally committed to providing you with beloved pieces of jewelry that will last you a lifetime, and with that goal in mind we offer a lifetime replace/repair warranty on every ring, necklace, bracelet, or earring that we sell.

Stop in and see us - we will be open for shopping our normal hours of 10 - 4pm Monday through Friday as well as Saturday 19th for those of you that find weekend shopping is easier.  55 Minnesota Ave downtown, directly above The Wine Shop. 

Coupon Code Bronwen Jewelry eclipse10

Central Oregon is gearing up for next week’s “Apoca-Eclipse” (we’ve been warned to expect up to 1 million visitors). There are plenty of solar themed events taking place in the area, like Oregon Solar Fest. So along with other merchants in downtown Bend, we at Bronwen are busy making sure that when you visit, you’ll find what you’re looking for. We shop locally as much as possible, and hope that you will, too.

           
Posted in Blog By Bronwen Jewelry
Ride On!

Ride On!

8/7/2017 10:01 AM

by Ashley Lodato

You feel the wind blowing on your face, hear the rush of it in your ears, see the road shimmering in front of your handlebars. You bank around a corner, exhilarated with your speed. Coasting down a hill, you see trees pass in a blur. You glide slowly to a stop, put your feet on the ground, and take a deep breath. “Hey,” says the gal on the bike next to you, “I love your earrings.”

Oh sure, she notices your sweet wheels, your confidence, your strength, but what really stands out for her is your jewelry.

ribbonwrist

If you’ve ever struggled to unsnarl an earring from the straps of a bike helmet, you’ll want to consider Bronwen Jewelry Tiny Charm earrings and posts next time. Our Tiny Charm earrings are small and sleek enough that they won’t hamper your ride or tangle with your hair or equipment, but they’re whimsical and sparkly enough to attract attention. Paired with a Tiny Charm necklace, the earrings make up a matched set; worn alone, the sterling silver or gold vermeil earrings are adorable enough to stand up on their own as accessories. In fact, some of our jewelry is so perfectly suited for bike helmets and apparel that it would be almost criminal to leave home for a bike ride unadorned.

Cyclists go wild for our Ribbon Wrap bracelets, which are soft with a vibrant blend of color and the sparkle of gold or silver-plated pewter. The wraps are adjustable, making them perfectly tailored to your wrist. Admiring this colorful wrap on your wrist will give you a boost of energy on the trail—but don’t forget to watch the path ahead! If your wrap gets dusty, no problem; simply clean it with some soapy water and allow to dry.

ribbonwrapkeileidescope

Like all Bronwen Jewelry, our Tiny Charm earrings, posts, and necklaces, and our Ribbon Wrap bracelets, are made by hand in our Bend, OR studio and come with a lifetime repair or replace warranty.

One of the driving factors of moving Bronwen Jewelry’s studio from Berkeley to Bend in 2012 was the proximity to world-class biking. Mountain biking, road biking, fat tires, cruising around on townies and electric bikes, and hauling cargo bikes with kids—you name it, Bend loves its cyclists, and the resident and visiting cyclists who come from all over the world love Bend.

cargobikebron

Our love of cycling inspired us to become members of the Central Oregon Trails Alliance (COTA). COTA constructs and maintains human-powered multi-use trails and promotes safe and quality mountain biking experiences throughout Central Oregon. Bronwen Jewelry joined COTA not only because its founders are avid users of the trails and want to contribute to their maintenance and care, but also because we are passionate about outdoor recreation in general and stand behind COTA’s mission of enhancing the outdoor experience.

After COTA, we quickly discovered two Bend retailers whose support of bicycle sports is unparalleled: Pine Mountain Sports and Bend Electric Bikes. Both shops promote outdoor cycling and are great shops to rent or buy the bike that suits your needs.

bronporcupinerim

At Bronwen Jewelry we’re all about cycles: the moon, the seasons, even the pattern of regularly repeated events we engage in, from Bend’s First Fridays to the annual Outdoor Retailer Summer Market. And yes, the rotation of those wheels on the bike of our choosing. At Bronwen Jewelry, we like to keep the wheels spinning. And as new ideas roll in, we make fabulous new products (like our Tiny Charm and Active Jewelry lines) available to you. 

           
Posted in Blog By Bronwen Jewelry
Swim Wrap Bracelets: One Size Fits You

by Ashley Lodato

Nothing says summer like long hours spent in the water. Whether you’re a river rat, a surfer girl, a lap swimmer, or just a gal who can’t resist the siren song of any body of water, you’re happiest when the dominant chemical formula in your life is H2O.

We share your passion for a life on the water and we know how to help give you a boost with your summertime jewelry. Most of our active jewelry is water-friendly—but our Swim Wrap Bracelets were created specifically to spice up your water-sports ensemble.

The concept of re-using scrap fabric coupled with an interest in creating the ultimate jewelry for water activity. This led to our co-branded partnership with Carve Designs, and the result is a collection of stunning water-friendly bracelets that keep waste material out of the landfill. 

When Carve Designs fabricates one of its signature bikinis, tankinis, or rashguards at the Los Angeles or San Francisco small factories, a small amount of fabric remains in excess. Bronwen Jewelry repurposes these pristine remnants into use in our Bend, OR studio, creating original swim wrap bracelet which are as compatible with water as the swimsuits they come from. 

Like all of Bronwen Jewelry products, the swim wraps are made in the USA by hand, and are covered by our lifetime repair/replace warranty. With their bright and bold patterns accentuated with sterling silver beads, the bracelets also make a functional headband or hair tie and are colorful, adorable, practical, fully adjustable, and fully waterproof. They’re supple and stretchy, designed to accommodate any wrist and fit anyone (yes, men like them too); one size flatters all. You won’t find a more versatile bracelet for water.  We've been seeing girls wear them as chokers and double wrap anklets and we love it!

You want a bracelet to match your swimsuit? Not a problem—Bronwen Jewelry and Carve Designs have you covered. But the patterns are so fresh and fun—not to mention affordable— that you’ll probably find yourself wanting to have more than just one. 

Bronwen Jewelry ambassador Jill Wheeler is just one of many water girls you might see in a swim wrap. As a kiter, surf, and stand up paddleboard yoga instructor, Jill can’t let her jewelry get in the way of her water sports and she has traveled the world extensively sharing the good word of Bronwen Jewelry with watergirls far and wide.  Another Bronwen Jewelry ambassador, Fiona Wylde, a professional SUP racer, windsurfer and surfer, likes the femininity a piece of jewelry adds to her racer image. Fiona says, “I think what Bronwen is doing is really cool, and it promotes women in sports to pursue their passions and take their sports to the highest level, but to still be feminine at the same time.” Wearing a swim wrap while rocketing across the water on any kind of water board, Fiona is a model of powerful femininity.

If the idea of endless summer is as appealing to you as it is to us, put on a swim wrap to bring that seasonal feeling of sunshine, warmth, and waves into any day of your life. Your swim wrap loves to swim, surf, and SUP as much as you do, and you can be year-round best friends.

 

           
Posted in Blog By Bronwen Jewelry
Collections and Connections

Collections and Connections

7/28/2017 10:14 AM

The only number you need to remember this week is 25. Got it? 25. Because in a serendipitous (albeit cosmically meaningless) occurrence, Bronwen Jewelry can be found at Booth 25 when Outdoor Retailer opens on July 25 for Open Air Demo, and throughout the 4-day duration of the Summer Market trade show in Salt Lake City, Utah.


There are two reasons that Bronwen Jewelry participates in Outdoor Retailer: collections and connections. First, we can’t wait to share some of our new handmade artisan jewelry collections with you, designed and fabricated at our studio in downtown Bend, Oregon. We will be debuting new and original jewelry designs (all covered by our lifetime warranty, as always), as well as featuring our best-selling products and introducing some of our personal favorites and go-to pieces.


Bronwen Jewelry was born of a desire to create feminine jewelry that sporty girls could wear out in the backcountry—jewelry that would stand up to sand, salt, water, dirt, and sweat. Although we’ve expanded our line to include some artisan jewelry that probably won’t benefit from a full immersion, our roots remain in our active jewelry collections: the bracelets, necklaces, and earrings you can put on as you start your trip out into the wilds and which look just as great a week later when you emerge. Whether it’s a necklace inspired by a particular landscape, or simply a bracelet that adds a pop of color or sparkle to your backcountry travels, your Bronwen jewelry will stand up to the rigors of adventure.


Early on, retail companies like Title Nine and Sundance realized what a niche Bronwen Jewelry was filling, and have been ordering from our collections for the past decade. Not only is Bronwen Jewelry as sexy and as strong as the women who wear it, but every piece is backed by a lifetime repair or replace warranty. That’s a standard of quality and product commitment that trusted retailers like Title Nine and Sundance can get behind.


Since the beginning, Bronwen Jewelry has been committed to the connections we’ve forged with organizations that do work we admire. At a crossroads early in our inception, Bronwen Jewelry faced some tough decisions about sourcing materials. Ultimately, what felt true to our company’s brand was handcrafted jewelry made with fairly-acquired materials in respectable working conditions. Despite our growth over the years, we continue to hold ourselves to this standard.


Now, Bronwen Jewelry partners with organizations like Too Precious To Wear, which focuses on coral conservation (coral may look great on your bracelet, but it’s best left in the sea) and the No Dirty Gold campaign, which works to ensure that gold mining operations respect human rights and the environment.


Bronwen Jewelry has also been working to deepen strategic partnerships with organizations like the Bend-based Conservation Alliance to protect wild places and the Hera Foundation to eliminate ovarian cancer. We share a passion for the mission of these organizations and we support them through business membership and/or a percentage of sales of specific products, such as the custom Hera necklace and ear jackets. It’s connections like these that add value to what we’re doing at Bronwen Jewelry and establish us as partners for humanity and for the environment.


Come visit us at Booth 25 at Outdoor Retailer. At Bronwen Jewelry we understand that every retailer serves a different clientele, and we’ll help you select the pieces that will best help you connect with your unique audience. Our collections will be your connections.

           
Posted in Blog By Bronwen Jewelry
BRONWEN JEWELRY AT OUTDOOR RETAILER : taking a stand for wild places

By Ashley Lodato

By now you’ve probably heard that Outdoor Retailer, which has spent the past two decades hosting outdoor industry trade shows in Salt Lake City, Utah, is moving operations to Denver, Colorado in 2018.

Sure, Outdoor Retailer periodically evaluates its venue, to ensure that it is serving its customers’ culture and business needs. But this year’s evaluation was done with a little more scrutiny, in light of recent environmental and public lands decisions in the Utah legislature that were at odds with the values driving those who attend Outdoor Retailer.

In February 2017, Utah Governor Gary Herbert signed a resolution urging President Trump to rescind the creation of the Bears Ears National Monument on tribal lands in southeastern Utah, newly designated under the Obama administration. Three days later, Patagonia took a stand against the governor’s action by withdrawing from Outdoor Retailer’s Summer Market. Gear companies Arc’teryx, Peak Designs, and Polartec soon followed suit. Patagonia, which was a key player in establishing the national monument, also launched a phone campaign to get Utah residents and others to voice their support for the monument.

In July 2017, after months of speculation, press releases confirmed what had come to seem inevitable: Outdoor Retailer’s move to a state whose progressive philosophy about public lands, conservation, and the spiritual and economic values of outdoor recreation are more aligned with its own.

These pioneers of the outdoor industry are not questioning the value of Outdoor Retailer trade shows; they’re simply blazing the trail of protest against policies and philosophies in Utah that increasingly jeopardize public lands conservation.

For the 10th year in a row, Bronwen Jewelry will be exhibiting at Outdoor Retailer’s final Summer Market in Salt Lake City, but ultimately supports the move to Denver. “As a pioneer of the Active Jewelry category in the outdoor market,” says owner/designer Bronwen Lodato, “I am committed to a host location that values and nurtures the protection of American treasures like the Bears Ears National Monument.”

Bronwen continues, “Even as a young girl I cherished wild places. Later, through my work with Outward Bound, I saw the critical importance of protecting open spaces, dense forests, and free-flowing waterways for future generations.”

Bronwen designs her Active Jewelry line for girls and women like her—gals who like to feel feminine even when they’re out in the mountains, on their bikes and skis, on the rocks, and in the water. Bronwen Jewelry’s active necklaces, wrap bracelets, and artisan earrings hold up over time to the rigors of nature—sand, salt, sweat, water, dirt. They’re strong, water-resistant, rugged yet feminine, and simply sexy. Bronwen Jewelry is for the adventurer; it’s active jewelry that looks good and feels good.

Bronwen Jewelry: jewelry that stands up to nature, a company that stands up for nature.

           
Posted in Blog By Bronwen Jewelry
Earth Day Everyday : How New Pieces Emerge

Like most things in life, designing jewelry for active women is not about the destination...it's all about the journey. 

The gathering of ideas, materials, excitement of a new and beautiful piece is the most valued part of the creative process.If you think of the art that you make as an accumulation of the experiences you have then this makes perfect sense.We live the adventuring lifestyle and we love to do it in beauty and with grace. When we touch other women who can relate to or benefit from our jewelry, it just makes the journey all the more sweet.

           
Posted in Blog By Bronwen Jewelry
The (many) Benefits of Open Borders: Enabling The Flow of Inspiration
I travel often. I travel for work, I travel for pleasure...heck, I travel for the sake of traveling. People often ask me if traveling so much is exhausting for me but in fact, for me, it is exactly the opposite: I am entirely inspired by living a life in motion. One thing that has been particularly troubling as I contemplate the possibility of having a physical wall built between the US and Mexico is how so many of us will be directly affected in a negative way. Certainly, Mexican immigrants living in the USA have actual life concerns but for those of us with a reliance on exposure to travel and adventure, ethnic textiles, Huichol beaded jewelry and the raw experience of being out of our normal day to day routines.....well, we suffer too. As I have just returned home from my 3rd trip to Mexico in the past year, I feel gratitude now more than ever for the many years of inspiration that Mexico has provided me. I may be a designer of active jewelry but my true inspiration for all the wonderful best selling beaded wrap bracelets and ribbon wrap bracelets and tiny charm necklaces that I see on women (even when I travel!) come from hours spent soaking up the delicious colors and textures of Mexico. The inspiration comes from the thrill of traveling to a country that is not my own and having to find my way with language barriers, food barriers, currency barriers....and most importantly the kindness of strangers. Perhaps that is why I return so often to Mexico...so many things about it feel so stimulating and yet so familiar. I hope I can always consider Mexico an alternate "home."
           
Posted in Blog By Bronwen Jewelry
Protecting the Family Jewels: Jewelry Care and Storage

Like your art, your jewelry seems tailor-made for display. Silver sparkles and gold shimmers, bright colors complement and contrast, earth tones provide balance. A vibrant pottery bowl filled with beaded bracelets invites a closer look; a piece of lace threaded with pairs of earrings becomes an intricate tapestry; a row of necklaces on vintage hooks is as engaging as an oil painting.

With so much eye candy, who doesn’t want to be able to look at it all the time?

Pinterest and DIY websites nurture the concept of jewelry stored out in the open, with irresistible ideas for making your jewelry double as decor. Who can say no to a ceramic egg carton filled with rings? Antique door knobs on an old piece of barnwood practically beg to be draped with necklaces, while porcelain bowls overflowing with bangles take the pirate treasure chest approach. And tiered cake stands drip strands of beads like a waterfall. It’s what all the crafty gals do, right?

A+ for form, D- for function.

As much as you want to showcase it, your jewelry is meant to adorn your body, not your walls or bureau top. Your chest is the background for pewter pendants and gold charms; your wrists and ears are the settings for silver droplets and glass beads. But when you take your jewelry off, you should put it safely away.

Like any good curator, you need to consider the needs of your jewelry before the whims of your internal interior decorator. Although bowls, saucers, and hooks provide a convenient place to toss jewelry once it’s off the body–not to mention an easy way to take visual stock of your collection–these storage methods put your jewelry at risk of tarnish and scratches.

Gold is soft and malleable, and is thus easily scratched by harder metals and gems. Silver is subject to tarnish, which is a result of exposure to moisture and air. Glass beads are, well, glass; and as we all know, glass can break if slung too carelessly into, say, a ceramic or copper bowl.

Here are a couple of tips for keeping your jewelry bright, clean, and sparkly:

  • Store your most valuable pieces in their original packaging, or wrapped in anti-tarnish cloth inside small plastic bags.
  • Store statement pieces that you wear less often in their original packaging, or wrapped in anti-tarnish cloth inside small plastic bags.
  • Store gold jewelry in soft cloth bags.
  • Put silver jewelry in small plastic bags with anti-tarnish tabs. Or, store multiple pieces in anti-tarnish cloth flapped jewelry pouches. (We know–who has time for pouches? On the other hand, who has time for polishing jewelry? Pick your battles.)
  • Use a proper jewelry box, with lining and compartments. (Sigh. We know–it seems like something your grandmother would do. And that’s why her jewelry will still look pristine when you inherit it.)

If you simply can’t bear to have everything packed away in pouches and drawers, we reluctantly approve the display solutions below.

* Create a shadow box jewelry holder. It must be the type with the hinged class on the front. We urge you to include a spot for anti-tarnish tabs. 
* Utilize airtight glass storage containers, preferably lined with a piece of anti-tarnish cloth. Small canning jars are quite stackable, and there are some adorable jars available at craft stores.
* Invest in glass cloches designed for jewelry storage. Eventually you will break the bell-shaped tops taking them on and off the stand all the time, but they’ll look great while they last.

Now your costume jewelry–your acrylic beads, your faux pearls, your crocheted wristlets and such–those are the pieces you can hang on the walls, drape artfully over branches, and even store in the bathroom. They will neither tarnish nor scrape, and will give you that burst of color you’re seeking.

Oh, but wait, we know you–you’re a Bronwen gal. You don’t have any costume jewelry. It’s only the real thing for you, babe. You don’t give anything else in your life slipshod treatment, and you don’t intend to start with your jewelry.

           
Posted in Blog By Bronwen Jewelry
Bronwen Partners with The TESS Research Foundation

It began as a love story. High school sweethearts followed each other to college at Princeton, then launched their married lives as graduate students at Oxford. Ambition and intellect foretold advanced degrees and illustrious careers for both Zach and Kimberly Nye but life, as so often happens, intervened. With the birth of their first daughter, Tessa, Zach and Kim’s world was, proverbially, rocked.

Within 24 hours of her birth, newborn Tessa was having seizures, many of them. Although her tests displayed normal results, Tessa was clearly experiencing something extraordinary. The Nyes took their new baby home from the hospital with a veritable pharmacy of medications and adjusted to their new life as parents of a child with frequent seizures and the resulting developmental delays.

Bolstered by doctors’ belief that Tessa’s condition was either not genetic or a de novo genetic mutation—one that would be highly unlikely to occur again—the Nyes produced two more daughters: healthy, happy, completely normal little girls. The birth of their fourth child, however, brought Tessa’s condition back into sharper focus. Colton, the Nye’s beautiful little boy, began seizing within hours of his birth. Whatever hopes and dreams the Nyes might have for the future of their family would need to be adjusted to accommodate their children’s needs.

It turns out that both Tessa and Colton suffer from a rare genetic disorder that causes seizures, called SLC13A5. Children with SLC13A5 deficiency are so new to the scene that the Nye kids are among the very first to be diagnosed. Although epilepsy is quite common—1 in 26 people in the United States develops the condition (that’s one in almost every public school classroom!)—this particular form was identified only in 2014, by a team of researchers that now works with The TESS Research Foundation, a 501(c)3 founded by the Nyes and dedicated to finding a treatment for genetic disease SLC13A5.

Ironically, there is no history of epilepsy in either Kimberly’s or Zach’s family; however, with an autosomal recessive disease, the parents have one good copy of the gene and one bad copy. Both Kimberly and Zach are recessive carriers of the disease and two of their children inherited bad copies of their parents’ SLC13A5 gene, resulting in the severe neurological problems that characterize their lives.

Kimberly runs The TESS Research Foundation, with help from a cadre of talented medical researchers and dedicated family members. Kimberly expected to need to find top-tier medical experts, but having the family on her team was a welcome surprise. “I did not anticipate having a lot of family involved in TESS,” she says, “but every time I needed an expert—in finance or PR or healthcare—I realized I had the best expert in my family.  My family understands firsthand how devastating this disease is and they are determined to find a cure.”

The family member who really makes The Foundation possible, however, is Kimberly’s husband, Zach, who is a financial economist and senior consultant at Stanford Consulting Group. “I’m convinced my husband is a superhero,” says Kim. “He has worked double-time so that I can be home with our children. Tessa spent her early years in and out of the hospital, often for weeks at a time. When Colton was young, it took 8 hours each day just to feed and medicate him. Somehow my husband managed to earn a Masters, a PhD, and a salary, all the while being there for me and for [the kids].”

How the Nyes manage the dance of marriage and parenthood coupled with two children with disabilities is part determination, part grace. “We are a pretty typical over-scheduled family,” says Kim. “Right now, we are in soccer season.  Lily and Maggie play on Saturdays and Tessa plays in a special needs league on Sundays.  There always seems to be a friend’s birthday party to attend or an extended family dinner to enjoy.” It was hard to get out when Colton was a baby, but lately, she adds, despite the daunting logistics of medications and toileting and feeding and bathing, “we are spending more and more weekends out and about as a family.  Some weekends, Zach and I feel more like coworkers checking everything off the ‘To Do’ list, but I think a lot of parents with 4 young kids would have the same complaint.”

“I feel like everyone has something in life that pushes ‘pause’ on happiness” says Kimberly philosophically, “an aging parent, a marriage hurdle, money troubles.  The severe form of epilepsy that Tessa and Colton have sometimes pushes pause on my family’s happiness.” She continues, “If I think too far in the future, I feel scared and panicked.  They are young now, but the idea that I may still be caring for my 40-year-old daughter and 30-year old son when I am in my 60s makes me feel overwhelmed.  The idea that this disease may significantly shorten their lives devastates me.”

Somehow Kimberly carries on. “I stay positive by living in the moment and by truly feeling grateful for what I do have, ” she says. “My daughter Tessa has literally hundreds of seizures daily.  I try to imagine what it is like to be her.  How confusing and scary it must be for her.  If she can wake up each day with a positive attitude—and she does!—then I have no excuse not to stay positive.”

Still, she acknowledges, “I don’t stay positive all the time.  I have days when I feel down.  Days when it seems incredibly unfair to Tessa and Colton that they have to spend so much time in doctors’ offices being poked and prodded; days when it seems unfair that our family cannot just head out the door without extensive planning and all the accoutrements of illness.” And, Kimberly admits, she worries that she is short-changing her genetically normal middle children. “My girls are such good sports,” she says, “but I worry that they are not having the carefree childhood that every mom wants for her children.” But it’s Kimberly’s positive attitude that is going to see this family through. Although family vacations are currently few and far between, Kimberly says, “I am not giving up on traveling.  We have great family trips in our future; I just know it.”

Kimberly’s immediate family has been a rock for her, too, and this helps boost her spirits. “My mom and sisters are truly amazing,” she says. “My love for them is fierce and unconditional.  Regardless of whether I am scheming up a kid birthday party or forming The TESS Foundation, I know that they will have my back.”

Despite the neurological challenges presented by their oldest and youngest children, Kimberly and Zach experience the same moments of parental pride and frustration common to all parents. The kids fight over iPads and Legos, but they also stick up for each other. Says Kimberly, “When Tessa has a seizure, Lily and Maggie (the two middle children) will automatically jump up to support her so she doesn’t fall—even though they are smaller than she is. Colton crawls through the sprinklers with his sisters and wrestles with them in the grass.  Their abilities differ but their friendship is undeniable.”

She adds, “The compassion that I see in Lily and Maggie melts my heart.” The Nye children are learning the critical life lessons of sharing, tolerance, empathy, and compassion. They’re not allowed to label, as Kimberly and Zach do not find terms like “mentally retarded” or “handicapped” very helpful. But, as Lily likes to say, “we sure do hate seizures.”

Another emotional boost comes from a little bling here and there. You’d think that with four kids, two with extremely demanding special needs, Kimberly wouldn’t have much time for girlie stuff, but you’d be wrong. “I am surrounded by sickness and determined to find a cure, but I am also a 35-year-old woman who has five sisters and likes to chat with girlfriends at school pick ups,” she says unapologetically. “I love to see what jewelry my friends are wearing.  I like hearing the stories about the meaning behind pieces of jewelry like birthstones, vacation mementos, and family heirlooms. Lily and Maggie really like jewelry and Maggie just got her ears pierced.  That’s a big deal in our house!”

Although Kimberly herself typically has no more than 15 minutes each day to get ready—usually with a crawling baby underfoot—she relies on jewelry to dress up or dress down her signature outfit of jeans, a trendy (“but machine washable!” she emphasizes) shirt, and flats. “I wear jewelry every day,” she says. “Regardless of whether I’m making meatloaf or swimming in the pool, I never take off my wedding ring.  If I am feeling like a hot mess as I run out the door, I put on a necklace and earrings and immediately feel more put together.”

Kimberly’s latest go-to piece of jewelry is a necklace made by her second cousin, Bronwen. Bronwen Jewelry has partnered with the TESS Foundation to offer exclusive jewelry inspired by the TESS logo. All proceeds from sales of the Petals for TESS necklace directly funds the Foundation’s research and development of a cure for the SLC13A5 deficiency.

Identifying SLC13A5 as a genetic marker allows for accurate diagnoses of severe forms of epilepsy, as well as helping pinpoint the underlying problems. Simply establishing the presence of this genetic marker brings The TESS Research Foundation and other citrate transporter disease researchers one step closer to developing treatments and a cure.

In the meantime, the Nyes hope to make an impact on the wider SLC13A5 community. The Board of Directors of the TESS Foundation covers 100% of the foundation’s operating expenses; consequently, every dollar donated goes directly toward the foundation’s work of understanding SLC13A5 Deficiency and developing a cure for the disease. “Host a fundraiser: lemonade stands, a lunch with girlfriends, a round of golf,” says Kimberly. “We would love for people to help us raise awareness about this form of epilepsy.” She adds, “My kids have this disease and I hope that I can help them. But this disease is bigger than my children. We hope there will be [other] people who want to make curing this disease a part of their legacy.”

Consider making this cause part of your legacy. Read more about the Nye family’s story here and learn more about SLC13A5 here; you can also visit the TESS Foundation on Facebook.

           
Posted in Blog By Bronwen Jewelry

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