Tuesday, October 30, 2018

Welcome, friends! I'm so thrilled you're here for the third installment of the Women Who Inspire series. If this is your first time popping over, in August The Lucky Lifestyle kicked off a monthly "Women Who Inspire" series featuring a profile of a different woman every month who is -- you guessed it! -- inspirational (and really, what woman isn't? But these ladies are extraordinary!). 

Today I'm SO happy and excited to introduce you all to October's feature woman, Kelly. I have known Kelly since middle school (remember those fun years?), and she is just as much fun and just as hilarious today as she was all those years ago. I've always admired her wit, but these days what I admire most is that she's not ever afraid to stand up for what and who she believes in, as well as the unique combination of strength and vulnerability she possesses when it comes to facing one of her biggest challenges: she recently tested gene positive for Huntington's Disease.

This woman is dynamite. Read on to to find out why, and be prepared to experience all the feelings... and to laugh. You'll definitely laugh.

1. Let's start with the basics! Tell us a little bit about yourself -- where you call home, what you do for a living, and who makes up your family.

I live in Washington, DC with my husband Scott and our dog Margot.  We love being here, it's a thriving city that negotiates power during the week and settles into a cluster of unique self contained neighborhoods during the weekend. There is always something new to learn, cool art to see, and delicious food to eat.

Since moving here in 2011 I’ve had a few jobs, but for the last 5 years I’ve been working in government affairs in the Agriculture sector. Exciting stuff, huh?  Its good work that provides me the freedom to pursue the fun stuff with the remaining 128 hours of the week.

(Photo credit: Oliver Vignola)

2. You are a potter -- so cool! How did you discover your love for making pottery?

In high school I fell in love with the idea I had of going to college to study Fashion Merchandising-It was business but glam! I quickly realized that it was way less interesting and way less glam than I had hoped. I transferred into a smaller school with an arts program and flourished. I was given the opportunity to explore different mediums including clay. I loved the way that I could just transfer my imagination into this lump of goo! It was so fun! Then I spent a few years working in arts administration which gave me a broad view of the pottery process so when I got the chance to take a full blown wheel class, I jumped at it! I ended up taking classes for 3 years and then became a Community Artist at District Clay Center where I keep my studio today.

3. What has your career path looked like thus far? Are you where you thought you would be ten years ago?

Oh man, no way.  I thought I’d be in New York running a gallery and living in a sexy high rise apartment that’s all windows or something. At the time, that mindset was common among my peers, so I kind of just adopted it as mine. After that big change in college though, I just started following my heart all over the damn place! I worked in arts programming and studio management before I moved into government affairs. In the meantime I took up every opportunity for education of any sort that came my way. I’ve taken a ground school class for pilots; a college workshop about the science of electric kilns; and a one day class called Women Run Campaigns, among others.  When you think trajectory-you think flying through the air bypassing all the obstacles on the ground. I used to really just want to fly straight to the top, but now that I’m in it, I love zig-zagging around those obstacles on the ground.

4. Three years ago you tested gene positive for Huntington's Disease, a disease that has taken the life of your great grandmother, both of her children, and five of her grandchildren, including your father at the age of just 48. Can you share what Huntington's Disease is for those who aren't familiar with it?

Huntington’s Disease (HD) is a genetic brain disease that stays dormant until mid-life when memory, cognition, and motor skills begin to diminish. Every offspring of someone with HD has a %50 chance of inheriting it. It is rare and only about 20,000 Americans are diagnosed in some way, but that means an estimated 250,000 others are at risk.

The diagnosis process for this disease is different from many others. If you wait until you show symptoms a test is almost unnecessary, but if you get tested before the symptoms come you just kind of sit in limbo wondering when the symptoms will surface. I am in that limbo right now; I’m gene+ but not yet symptomatic and do not have a clinical diagnosis.

Because researchers have identified the gene, you can be tested any time after 18 years of age regardless of symptoms. I am of the first generation that could utilize this test as they only identified the correct gene in the 1990s. Getting tested might sound like a no-brainer on paper, but there is not yet a cure, nor are there any viable treatments on the market, so knowing the results can be really scary.

There are some amazing trials happening in the UK and Canada with what they call “Gene Silencing.” Everyone has the Huntington gene, but HD+ people have a mutated version. While a normative functioning gene makes proteins that send instructions to your brain, an HD+ gene cannot properly create those proteins. The proteins it makes cannot be interpreted by the brain so it confuses its signals causing uncontrolled movement and clouds cognitive functions. Gene silencing switches the gene off so it stops making proteins entirely. Again, it sounds great on paper but there is still a lot of research (that needs a lot of funding) to be done.

5. In what ways has Huntington's Disease changed your outlook on life? What would you want other people to know about your experience?

Even though it is a rare disease, it has a heavy presence in the families it affects.  HD has been discussed in my family since I was a child, we’ve lost a lot of loved ones. I think that made my own diagnosis digestible for me, because I’ve seen it.  The biggest impact, even bigger than my personal test results, was seeing the way it affected my dad.

When he lost his big brother he came unglued by the reality that it could be his fate, too. By the time he received his own clinical diagnosis 6 years later he had already started showing symptoms-and was working very hard to hide them. He was someone who believed in hard line gender roles, so being “the man of the house” was fused with his sense of self. So when his abilities to be decisive, to lead, to provide all began to fade away he viewed himself fading away, too.

That has colored my outlook for my future, and taught me to view things for what they are now, rather than what they’ll be in the next 5-10 years and beyond. For now I’m rolling with the punches and doing my best to appreciate the bomb ass gifts in my life right now. There are dark days, for sure but they’re manageable because of the awesome support system I have.

My loved ones rallied behind me so hard when I told them my results and have stayed there ever since. Some of my friends got together and made ham sandwiches and raised $400 for research by selling them. Can you believe a ham sandwich could hold so much power? I never could’ve imagined. A different friend joined the Huntington’s Disease Society of America’s NYC Marathon team, and she’s raised over $4000 and will run on November 4, but can fundraise through December 31. You can find her fundraising page and donate, if you'd like and are able to, here.
While the disease itself invokes fear, I know it’s superficial. I have such warm giving people in my life who are helping me through this stage and I know will be there for me in the next one.

6. Where can people learn more, and what can they do to help (what questions to ask/not ask, where to donate, how to take action, etc.)?

The Huntington’s Disease Society of America (HDSA) is the best resource I’ve found for information on the latest studies/medical trials. Annually they award grants to HD Clinics across the country under a program called HD Centers of Excellence. They do a great job of stretching the resources to serve the most people in need. If anyone would like to donate to fund that program, the link above for Mallory’s marathon is doing just that. You can also donate directly through their website

Another great way to help is to find a HD clinic near you and ask if they need any control subjects for any research they’re working one. That’s one of the hardest parts about a rare disease is that everyone with the disease wants to get in on the trial, but they can only do it if they have a pool of people with normative brain function to compare to them. Time commitment can vary from once a month or once a year depending on the program, and they just might even pay you! has a tool where you can search on a map by zip code to find the closest HD clinic near you.

By now I sound like a broken record, but HDSA is a great organization. It was founded by Woody Guthrie’s widow Marjorie, after he died from HD. She started it with an ad in the paper inviting other families who have experienced HD to her kitchen table to talk. It is a grassroots movement and continues to operate as a cluster of symbiotic chapters that work with the families in their region. Full disclosure, I am a former President of our Washington DC Chapter and know first hand how impactful their work is.

So for you, the reader who wants to help, you can check out your local chapter, they can always use reliable volunteers. In most regions there are 5k walks/runs, Educational Panels, Galas and brunch events taking place all year round.  HDSA has 4/4 stars on Charity Navigator, including a 100% score on transparency so should you choose to donate money, time, etc to this you can feel good about it.

7. You're currently working on writing your first book. What has that process been like so far? Any tips for other aspiring writers?

I’m writing this book for myself first, it’s a memoir because I want to have my memories documented before they slip away. It has been an emotional process for me so far. So For this specific writing, I’ve found that starting broadly with the Ws of each piece then going back to really dig in on a specific issue is the best way for me to stay focused without forcing it. Even though some of it is pretty heavy, I’m having so much fun remembering things on purpose! It’s still in its infancy though, so I might have to amend this in a few months.

8. You aren't afraid to stand up for what you believe in. Tell us which issues you are most passionate about and what you do to work toward change.

I’ve been a feminist ever since I had to say the word chauvinist in a school play when I was 8. My mom politely corrected my pronunciation, and diplomatically answered my question about what it meant. To which I replied “Who says!?  Who says girls aren’t as good as boys!?” and my balled up fist has been perched on my hip ever since.

I’ve also learned a lot since that day about how it’s not just SOME boys not liking SOME girls, but that there are systems in place at every level of our country to hinder women and girls from excelling. Then I uncovered that systems just like that are in place to disadvantage non-white races of every sex.  

I am always uncovering new context that I had been shielded from during my white suburban upbringing. To support this I’ve marched in protest. I’ve amplified voices of people who are black, gay, disabled, anything that is a perspective I personally cannot have. And mostly I listen to and believe my sisters and brothers when they say they don’t experience the freedom of which America is so proud.

9. What would people be most surprised to learn about you?

I’m actually a lot of fun! I know that a loud and proud feminist with ticking time bomb of a terminal illness doesn’t sound like the life of the party, but it’s true. I love meeting new people and dancing around and just learned how to play bananagrams!

But yes, I try to approach everything with a strong sense of humor because everything in this world is absurd and it is not fair to only give credence to the serious parts!

(Photo Credit: Sarah Schu)

10. What would your ideal day look like, from start to finish?

Wake up with the sun, and snuggle up in bed for as long as I feel like.
Flesh out some ideas for whatever I’m working on and jot down a few new ones.
Go to the dog park and hang with Scott and our great neighbors while Margot gets some relief from our apartment.
Head to my studio to throw some new work, and surprise it’s someone’s birthday and they got one of those cakes from Milk Bar Bakery and they want to share it with me! Make some work, and move some other work along in the process.
Come home and play with the dog and give Scott a TedTalk about the process of the pieces I brought out of the kiln at the studio.
Then I shower and actually use all of the dumb products I own, and get dressed to go out to dinner with Scott, and friends.
We have a reservation (no waiting!) at a new restaurant where I can order whatever has goat cheese on the menu, a bottle of wine for the table and some type of brownie/ice cream dessert to split!
Then get to bed at a reasonable time, and remember to take off my makeup first.

Kelly, thank you so very much for sharing so much of yourself and your life with us! You have no doubt inspired many. If you have any questions for Kelly, feel free to ask them below (and to just say hello!), or send them to


  1. Wow, she's amazing. I hope I get to read that memoir some day!

    1. She really is incredible, isn't she?! I have a feeling we'll both be able to get our hands on her book before too long. :) Thanks so much for reading/supporting -- this series is so close to my heart.

  2. Oh wow. I had no idea about how bad HD can be. I had no idea about the genetics of it and that there is no cure. Kelly is pretty awesome with her outlook on life. Thanks for sharing!

    1. I had no idea before talking to her about it either. Such bravery, resilience, and admirable grace/humor, don't you think? I'm so glad you enjoyed "meeting" her!

  3. Kelly is such an amazing woman! I am inspired by her everyday, so glad your readers get to meet her!

    1. I agree 100%! I'm honored to introduce her to women I know will be just as inspired by her. :) Thanks for stopping by!

  4. Kelly truly is an inspiration. So articulate - her interview had a wonderful heartfelt flow to it. She is doing an incredible job educating about Huntingdon's. I am incredibly inspired by her outlook and embracing of the now. I would love to hear more from her. I worked in govt affairs to and had to chuckle about the visualisation of her DC appt, I had similiar ideas! Great woman, you arw lucky to have her as a friend, keep us posted xx

    1. Thank you so much, Joanne! I was SO looking forward to your thoughts on this month's profile of Kelly, since I had a feeling it would resonate with you. What I love about her is her fearlessness and her ability to find the HUMOR in life -- even its most unhumorous moments. I will definitely keep you posted, perhaps will do an update with Kel down the line. Thanks again for your support, xo


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