Celebrating the history of women in Kentucky politics

Only 26 states have elected a female governor. Kentucky is one of them. 

There is no discussion of women's history in this state without the mention of Governor Martha Layne Collins.

Elected in 1983, Governor Collins was only the seventh women in history to serve as Governor of her state and she served us well.

I was honored to meet Governor Collins last weekend when she was recognized at Women Turning Kentucky Blue: Celebrating 5 Years of Emerge Kentucky.

Emerge Kentucky is the premiere political training program for Democratic women considering public office. The evening was a celebration of not only the women considering a run but the ones who have already taken the leap. 

We celebrated Governor Collins for paving the way for so many. We celebrated Alison Lundergran Grimes, whom we hope to be the first female Senator from Kentucky. We celebrated Sannie Overly, the first female in Kentucky history elected to party leadership.

However, we all know the victories we celebrate as women in Kentucky politics are too few. 

Kentucky still ranks 47th out of 50 states in female political representation. While the numbers of female state Supreme Court justices have increased in recent years along with representation in our state legislative bodies, women are over half the population in this state and we deserve to see faces like ours at the table.

Governor Collins is a pioneer but as Representative Overly so eloquently said Saturday night, "I look forward to the day when the novelty of a woman in an elected position is no more."

Secretary of State Alison Lundergran Grimes, Attorney Jennifer Moore, Governor Martha Layne Collins, Representative Sannie Overly, and The Honorable Crit Luallen ~ Sarah Stewart Holland

Shipwrecked at the Circus in Louisville

Did you know that there is a cirque-style circus in Louisville? Annual shows began in 1948 following World War II, featuring members of a professional Circus troupe wintering in Louisville.

Photo credits: Rebecca Hellemans Foley

Over 60 years later, Tuners Circus is still performing annually with shows including people of all ages who train throughout the year at Louisville Turners. This weekend and next, Turners is having their annual Circus, themed "Shipwreck." Come out to enjoy daring feats by aerial artists, fire performers, jugglers, and more!  This is their primary fundraiser for the year and is a fun experience for the entire family.

• Show dates: March 14, 15, 20, 21 or 22 at 7:00pm and March 16 or 23 at 2:00pm 
• Cost: Advance tickets are $10 for adults and $5 for children 12 and under, available by contacting Turner Circus at www.turnercircus.org. Tickets purchased at the door are $15 for adults and $10 for children 
• Location: 3125 River Road, Louisville

See you at the circus!

Daniel Boone's Expedition

If you were once a Kentucky school kid, then you remember at least one anecdote about Daniel Boone from grade school. It probably has to do with carving "D. Boon Kilt a Bar" on a tree. (His father, Squire Boone, is believed to have said of his own children's education, "Let the girls do the spelling and Dan will do the shooting.") As much as it pains this editrix to say, I suppose spelling isn't the most important skill one needs for the trailblazing life of a frontiersman. 

What is important to the Commonwealth of Kentucky is that, on March 10, 1775, the soldier and explorer Daniel Boone, working for Judge Richard Henderson of the Transylvania Company, undertook an expedition that would lead to the settling of Kentucky. Exploring the new Transylvania Colony, Boone foraged a trail known as the Wilderness Road into central Kentucky. There he founded Boone's Station (later Boonesborough) as the capital city of Transylvania County, in an area near the modern-day town of Athens in Madison County. He later said of first spotting the area:

We viewed Kentucke situated on the fertile banks of the great Ohio, rising from obscurity to shine with splendor, equal to any other of stars of the American hemisphere.

from Life & Times of Col. Daniel Boone by Cecil B. Hartley

Boone's adventures have become the stuff of legend. The kidnapping of his daughter Jemima, along with two other young women, was the basis for Last of the Mohicans. Boone himself was robbed, kidnapped, and attacked many times along the way.

The Abduction of Daniel Boone's Daughter by the Indians by Charles Wimar

In his later days, Boone was a statesman and businessman, and emerged as a symbol of frontier life and the establishment of Kentucky.Two hundred thirty-nine years later, we still remember Daniel Boone as the trailblazer who faced unknown circumstances, violence, and physical hardship to found our beautiful Commonwealth.

Follow Your Dreams Friday: 5 Questions with Lori Cheek of Cheek'd

Have you ever seen that show Shark Tank, which pairs entrepreneurs with potential celebrity investors? Tonight's episode features Kentucky native Lori Cheek, whose NYC-based startup Cheek'd is the next big thing in online dating. Lori graciously sat down for five questions with HerKentucky. 

Photo by

Kim Preston Photography

. 

HK: Tell us a little about yourself. 

LC:I was born and raised in a tiny, one stop light town in Taylorsville, Kentucky, which I thought was the smallest place in the world. As early as I can remember, I knew there was something out there I had to find and it felt far, far away. I eventually stumbled into a bigger city and studied architecture at University of Kentucky. During my studies, I guest interned at a New York City firm for just one week and was immediately hooked on the magic, diversity and energy of the city. On Graduation Day, in May of 1996, I tossed my royal blue tasseled hat into the air, sped home to pack up my Ashland Avenue apartment into a U-Haul and without a job or much of anything lined up, I headed straight for the big city to start building my dreams. 

After working in architecture, furniture and design for 15 years for companies such as Christian Dior, Goldman Sachs and Vitra, I came up with an idea that lead me into the NYC World of Love and Technology and am now solving missed connections one card at a time. I completely threw away my design career and am no longer building structures… I'm now building relationships.

HK: How does Cheek’d work? 

LC: Cheek’d bridges the gap between online dating and real-world romance by providing members with physical cards that they can use to entice people from the real world to flirt with them in the virtual world. It’s the 2.0 version of “Call Me.”  The cards offer a real purpose and advantage to other online dating sites and expand a subscriber’s dating opportunities beyond the pool of people registered with an online dating service.  By bringing the social aspect back into dating and moving it from your computer to your everyday life, Cheek'd is giving its members an opportunity to leverage technology without completely depending on it, while promoting a safe and playful interaction in the physical world at a time when virtual interaction is growing and online privacy is scarce. Cheek'd, coined by The New York Times as “the next generation of online dating” has gone global with customers in 47 states in America and 28 countries internationally.  And I know it works because after decades on my own relentless pursuit for love, one day a couple of summers ago, I was sitting solo at a Crab Shack in Montauk and with no AT&T signal, I decided to toss my best friend, “iPhone,” into my beach bag and when I looked up, a mysterious, gorgeous man in Ray Bans and a baseball cap sitting right next to me said, “Nice tattoos.”  I handed him the Cheek’d card that reads, “let’s meet for a drink.”  We met for that drink and now we're engaged!

Photo by

Ted Schafer Photography.

HK: Cheek’d is such a great concept — it adds a personal edge to online dating. How did you come up with the idea? 

LC: Six years ago, I was out to dinner with a friend & architectural colleague and I had excused myself from the table.  When I returned, my handsome dinner date had scribbled on the back of his business card, “want to have dinner?”  As we were leaving the restaurant, he slid that card to an attractive woman at a nearby table. He left with a pending date.  I left with an idea...  It had happened to me a thousand times during my NYC commute—spotting that intriguing stranger on a train, in a café, crossing the street, at baggage claim, etc. and nearly 999 of them got away.  Handing a business card could have been one answer, but I was entranced by the mysterious gesture of handing it to the object of your affection and removing the personal details included on a typical business card, which is simply too much information to hand to a total stranger.  A person’s name on a card, alone, could potentially lead you to their front door. My solution to the problem would apply a personal approach to online dating by moving the initial encounter offline with a smooth physical introduction.  In May of 2010, I launched Cheekd.com —my solution to the 999 missed opportunities I’d personally experienced.

HK: What was it like to be on Shark Tank? It had to be so exciting and surreal. 

LC:The journey leading up to the Shark Tank has been the most exciting year of my life. With 8.5 million viewers, I've finally been given the opportunity to share my million-dollar idea with the world. Deal or no deal, this experience has been life changing.  For weeks leading up to my pitch, I suffered a lot of anxiety and panic.  I’ve put everything I have into this business and the stakes are just about as high as they can get when you’re in front of the Sharks.  I’d never been more nervous in my entire life as I walked down what seemed like an endless hallway into the Shark Tank.  My heart was about to beat out of my body.  You’ve only got one shot and you can trust that I gave it my all.

HK: Here at HerKentucky, our motto is “Follow Your Dreams.” What is your advice to female entrepreneurs, especially those who have been told that an idea is too quirky or “unique” to work?

LC: My advice for other women in the entrepreneurial world is if you truly believe in your idea, give up excuses & doubt, surround yourself by a trusted and talented team, bulldoze forward and DON’T. LOOK. BACK. And if you’re single, you might even just find yourself a husband while you’re at it.  I did.

Thanks so much to Lori for taking the time to chat with us! Be sure to tune in to Shark Tank tonight at 9PM EST on ABC.

Create Easter Memories with Louisville Stoneware!

Spring is just around the corner, y'all.

I know, it's still ridculously cold outside. And, some of us even awoke to a bit of snow -- oh, I can't even bear to say the "s" word anymore -- yesterday morning. But, believe it or not, March begins this weekend. I saw a few brave tulip leaves peeking up in my backyard yesterday, and was encouraged to see my neighborhood garden-supply store stocking up with a semi-truck's worth of mulch this morning! Before you know it, we'll be wrapped up in college basketball tournaments, planning trips to Keeneland, and planning for Easter.

One way you can get started planning for Easter is with one of these adorable Easter Bunny Creating Memories Platter. Our friends at Louisville Stoneware have designed a simply adorable personalized Easter keepsake for those of y'all with kids or grandkids. The design features your child's footprint on a 14" stoneware platter, along with the child's name and the caption "is someBUNNY special. This keepsake is recommended for infants, toddlers and preschoolers with a shoe size up to 3. The Creating Memories pattern requires you, and, of course, your little one, to visit the Louisville Stoneware retail store, although no appointment is necessary. The Creating Memories Platter is $95, which includes cost of plate, staff assistance with capturing your child’s footprints and artists’ time. UPS delivery is available for an additional charge. Creating Memories Plates purchased by March 15 will be guaranteed complete no later than April 19. Personalized items take 4 to 6 weeks, and because the platter is specially made for you, cannot be returned. 

With a little positive thinking, and some early planning for Easter keepsakes, it is starting to feel a bit more like spring!

National Eating Disorders Awareness Week: My Story

This is National Eating Disorders Awareness Week, and while the name doesn't roll off the tongue, it's such an important time to really talk about something that usually carries such stigma but is really pervasive in society.

 

In the United States, 20 million women and 10 million men suffer from a clinically significant eating disorder at some time in their life, including anorexia nervosa, bulimia nervosa, binge eating disorder, or other specified feeding or eating disorder (OSFED).

I had no idea that I had one.

I had been worried about my weight since I was 5, when I started learning my mom's dieting ways. I thought that battling being legitimately overweight didn't have anything to do with an eating disorder. You could SEE that I didn't have problem with eating food, right? But you couldn't see it. Appearances can be extremely deceiving. Throughout the years, I restricted, binge exercised, and binge ate.

I didn't really understand what binge eating meant, I just told myself that I had no self control and was lazy and ate too much. The turning point came when I could understand:

Eating disorders are serious illnesses, not lifestyle choices. 

Thanks to ongoing therapy and education, it's been about 3 years since I last binged, but it's something that never goes away. Binge Eating Disorder (BED) is just one of several types of eating disorders. My hope is that by talking about personal experiences, we can start talking about it instead of judging others and keeping quiet.

More of my story can be found at Ladies' Home Journal online. To learn more about eating disorders or to find help, visit NEDAwareness.org.

Rare Diseases: Together We Are Strong

As many of you know, since September I have been taking a break from HerKentucky to spend time with my two year old daughter, Katherine Belle. In the meantime, I have started a new blog with my husband, Hope For Katherine Belle, to document our journey after receiving a phone call on Friday, August 30, 2013, that forever changed our lives.  This was a call from a neurologist telling us our daughter likely has a rare and progressive genetic disease.  Please take a moment to read our posts, including "Hope. Faith. Love.," "Death and Resurrection," "Dance! Dance!" and "Coping and Advocacy."  

This Friday, February 28, 2014, is “Rare Disease Day.” One in every ten people will suffer from a “rare” disease at some point during his or her life. Why, then, do we call them “rare?

The National Institute of Health defines a “rare disease” as one that affects fewer than 200,000 people in the United States. This definition of a rare disease was included by Congress in the Orphan Drug Act of 1983. There are approximately 7,000 diseases or disorders that qualify for this designation. Alone, each disease is rare. It is only when counted together that they are not.

Because of the Congressional Orphan Drug Act of 1983, the term “orphan disease” is often used interchangeably with “rare disease.” Anyone who suffers from one or, in our case, has a family member who suffers from one, can understand the harsh poetry of that term.  All too often, the sufferers are children. In many ways, they are abandoned by the scientific and medical communities. Few research projects are dedicated to these conditions.  Few doctors specialize in treating them. It is difficult to find support groups. It is hard to find people who understand what it is like to watch a child’s symptoms in ignorance of what is causing them and fear of what they may portend. We face life-changing decisions alone and isolated from any sort of community of peers. We are not just facing the possible suffering or death of a beloved child, but all the things that must be changed before we even know what the future holds.

Can both parents work when our child has obstacles to face? Can we enter into daycare or mainstream schools and risk the viruses and illnesses that can so profoundly affect a child with a rare disease? Can they accommodate a child with the issues our child faces? Is our house fit for someone with a disability? Can we afford to go down to one income? Can we afford to make our house accessible? Can we afford to travel to the physicians that specialize in caring for the rare disease patient? All of this is on top of the harsh reality that we or someone we love may be facing death, and while learning that the road to answers will be long and difficult.

When we were told that Katherine Belle likely suffered from Infantile Neuroaxonal Dystrophy or “INAD,” we searched for as much information as we could find on this condition. We had never even heard of it before the neurologist uttered the words.  And it is no wonder. We read that there are only nine children in the United States that are confirmed to have that condition right now, and only around 1,000 that have ever been diagnosed with it here. These numbers do not come from scientific sources, so we cannot stand by their accuracy, but the one thing we do know is that it is extremely rare

Compare this to cancer or heart disease.  Most people have been touched by both. Even small towns have more people currently living with cancer or heart disease than have ever had INAD in the history of the United States.

It is understandable that we donate our charitable dollars to studying conditions we know all too well.  We race for cures and donate to heart associations. When Congress or state legislatures set aside government research dollars, most of it goes to conditions well-known to voters.  On top of this, private corporations spend their money researching new drug therapies and procedures that will make them money. There is not much money to be made from nine INAD children compared to the billions to be made off of each new cancer therapy or even a minor improvement in a heart stint.

Yes, we are orphans.  We are alone, with voices too small and too few in number to be heard. This is why awareness matters. If our small choir stands united with the choirs formed by families faced with the other rare diseases, we are not small, we are not few in number, and we are not powerless. Alone we are rare.  Together we are strong.

There are concrete things we can change for the better.

One of the things we learned early on in our search for a diagnosis for our daughter is that these conditions are difficult to diagnose. Most “rare diseases” have a genetic cause. Our current neurologist analogized diagnosing a genetic-based condition to editing a book. This particular book consists of detailed chapters on how to build a person.  It defines how each cell is constructed, will operate, will replicate, will repair itself and will be stacked to create bones, tissue, brain cells and our whole body. Current estimates are that there are around 26,000 genes in the human body (somewhere between 23,000 and 30,000 by current estimates, excluding a lot of "non-coding DNA," which is not well understood), translating in this analogy to 26,000 chapters to edit.The genes range from a few thousand DNA bases to over two million bases per gene, translating in this analogy to chapters of a few thousand to a couple million words each. That is a very large book to edit.

What is in your genes?

Most of these chapters - or genes - come in duplicate. One “chapter” comes from mom and one from dad.  You have to know how each duplicate chapter works when the instructions are different (in our family, mom's instructions usually prevail, but that is not always the case in genetics), and you have to know how these chapters work in unison to know how the construction is to proceed. On top of all of this, environmental factors work into the equation. How does a virus, a toxin or a trauma factor into the blueprint when the body is being constructed? How do the chapters, themselves, define that reaction?

This editing process ends up taking a lot of time and costing a lot of money. By way of example from our circumstances, for INAD, we know that typos and omissions in the chapter or gene titled “PLA2G6” are known to lead to INAD. However, this is true only 90% of the time. In the other 10% of known cases, no typos exist in these chapters and science just has not discovered another cause.  So, we began with a chance that our child has INAD that this test - this edit - would not detect.

There are duplicate PLA2G6 chapters, and the condition is recessive, meaning that you have to have typos in both mom’s PLA2G6 chapter and dad’s PLA2G6 chapter for the child to have INAD.

Each of these chapters is written in script so small that our most advanced machines cannot accurately read them. As far as chapter PLA2G6, the test accurately detects known typos and omissions in a given chapter 85% of the time. In other words, they have used the test against genes that have been confirmed to contain INAD-causing typos, and only find them 85% of the time.  The known typos are missed the other 15% of the time; we simply cannot read all the words. Since typos have to exist in both mom’s and dad’s PLA2G6 chapters, however, if no errors are detected in either chapter, the condition is unlikely to be present (there is only a 2.25% likelihood that errors would be present, but missed, in both parents’ PLA2G6 genes).

So, running the INAD test can result in different outcomes: (1) both mom’s and dad’s PLA2G6 have typos of a sort known to cause INAD, in which case the child is diagnosed as having it; (2) either mom’s or dad’s PLA2G6 is detected to have such an error, but not the other one, in which case, the child may be deemed likely to have INAD based on clinical manifestations of INAD and the 15% non-detection error rate in the other “normal” gene; (3) neither parent has PLA2G6 errors that are detected, in which case, the child still may have it because of the 15% error rate in each PLA2G6 editing (a 2.25% chance), or because of the atypical INAD cases where there is some other cause; or (4) errors are detected in the PLA2G6 genes, but not of a sort known to cause INAD, in which case the results are a firm “we don’t know.” The end result is a definite diagnosis of INAD, a “maybe,” a “probably not,” or a “who knows,” but never a “no.”

The cost for these tests can run at around $2,000 each.  That’s right, $2,000 to test for just one condition of 7,000. Run the math. At $2,000 per test for 7,000 tests, the cost would be $14 million to edit all of the chapters known to cause “rare diseases.” Truth be told, the math is not that simple.  Some tests are cheaper, while others are more expensive. In no case would they run all 7,000, as many conditions can be eliminated based on clinical signs or other blood or urine tests. However, the reality remains that many of these rare diseases share symptoms and it is often necessary to run multiple expensive tests over the course of years to finally reach a diagnosis.  At the end of this long and expensive road, the physicians only come up with a definitive diagnosis half of the time. The other half of the time, we know there is some sort of metabolic disease, some rare condition, but we just do not know what it is. Our editing skills have not advanced to the point of knowing where to look for typos or what they mean.

No one can realistically edit all 7,000 chapters associated with these diseases, so doctors look for reasons to pull a particular chapter for editing. To do so, they perform less expensive (but not cheap) tests to try to figure out which chapter to edit. An MRI and MRS result justified the INAD test for Katherine.  It turned out negative (but not ruling out INAD, as discussed above).  So we move on to look for reasons to pull the next chapter.  She had an abnormality in her acylcarnitine profile. We’ve run it again.  If it turns out abnormal a second time, we have reason to suspect it may be one of the 30 known fatty acid or organic acid disorders, narrowing it down to 30 new chapters we might have to pull and edit. 30 edits at $2,000 each is still $60,000. It beats $14 million, but is still pretty expensive, particularly when there is a 50% chance that it will result in nothing definitive. We also have a follow up MRI/MRS, a genetic ophthalmologist appointment, and a spinal tap. We also are awaiting results from a skin biopsy.  All of these will provide hints at what chapter to pull next for an edit.

Thank goodness for that insurance, right? Wrong.

Our insurance appeal "letter."

In most cases, genetic testing is not covered by insurance. In other cases (like ours) genetic testing is covered under limited circumstances.  Insurance companies are in the business of collecting premiums, not paying claims. Therefore, it is rarer than these diseases for an insurance company to find the limited circumstances to be met.

The reason why genetic testing is routinely excluded from insurance policies or claims are rejected is simple: rare disease patients are easy to ignore, and expensive to hear. It costs nothing for the insurance company to let Katherine die, and $60,000 to see why her acylcarnitine profile is high, much less millions to see if she can be saved.

We are literal parents to figurative orphans left to die by harsh economic realities.

Considering she was thought to be the tenth child alive with INAD, she could be rejected without fear of economic backlash.  All ten of us could march away in anger and it would help, not hurt, the insurers' bottom lines.  And what is our alternative? Are we to go uninsured?  Are we to buy another policy if it, too, has a “let her die” policy toward genetic testing and rare diseases?

We have chosen a different alternative: To join together and be heard. We can change things for the better. We can put economic pressure on insurance companies to cover genetic testing.  We can put pressure on politicians to force them to cover it. We can force states to increase newborn screening.  We can expand awareness and education of the signs and symptoms of rare diseases. We can expand the flow of money into research of the genetic roots of all disease, including cancer and heart disease, leading to advances in the fight against the rare ones.  We can let the lucky 90% know our cause, as many will join our choir if they just know the song.

This is for your benefit. At a 10% overall rare disease rate in the United States, it will affect your family. It is a matter of when, not if. Help us change things for the better before you discover that you or your “Katherine Belle” is among that 10%, an orphan to the medical community and a burden left to die by your insurance company.

With our blog, Hope For Katherine Belle, and by sharing this post on HerKentucky, we stand up to join the chorus.  We are singing at the top of our lungs.   We contacted our state elected officials.  Kentucky Governor Steven Beshear has proclaimed February 28, 2014, as Rare Disease Day in Kentucky; Representative Sannie Overly will read a Rare Disease Day citation in the Kentucky House of Representatives.  It may not matter to many of you (yet, but it will affect all of you eventually) but it matters to us.  Katherine’s voice matters.  Katherine’s life matters. It is worth more than $60,000.  It is worth more than $14 million.

And, we will not go quietly.  We will be heard.

How can you help?  First, you can share this post with everyone you know to help us raise awareness.  Second, change your Facebook profile picture (see different examples below) to show your support for Rare Disease Day.  Third, encourage your local, state and federal officials to recognize Rare Disease Day. Fourth, wear a denim ribbon on Friday to show your support (jeans for genes) and tell people why you are doing so.

Click links below for additional information:

The Global Genes Project

Rare Disease Day

Rare Disease Day USA