Today, we introduce you to two strong, courageous sisters who are behind the Thisbe and Noah Scott Foundation (TNSF), an organization dedicated to promoting research, awareness and support for children and families affected by neuromuscular diseases. Their story is intensely personal: Laurian and her husband John lost two precious children to a rare, incurable disease, and together, these women work tirelessly to bring hope and light to families in the midst of great struggle. Welcome, Lindsay and Laurian!

Lindsay Ballew, left, and Laurian Scott, right

Lindsay Ballew, left, and Laurian Scott, right

Where did you both grow up, and how did you wind up in one Nashville, TN and the other in Oxford, MS?

Lindsay: Laurian and I both grew up in Jackson, MS. My husband and I moved to Nashville for his job after he graduated from business school at UNC Chapel Hill. Laurian and John bought a farm in Franklin, TN soon after Thisbe got sick. They moved to Oxford, MS, for a change of scenery after the deaths of Thisbe and Noah.

Laurian, tell us a little about TNSF.

What began as an attempt to find the gene in order to save my son, Noah, has become a full-steam-ahead effort to plug every hole that my husband and I experienced with our children within this realm of diseases. Not only do we hope to fill the void within research and therapeutics, but we also address that tremendous aspect of support while the wait for a treatment comes to fruition. We begin by transforming pediatric neurology “waiting rooms” into “TNSF welcome centers:” full-service advocacy portholes with volunteers engaging these children in dynamic “play,”  pet therapy, resources to help parents navigate their child’s illness, and so much more. In short, we are hoping to do for pediatric neuromuscular diseases what centers like St. Jude’s have done for pediatric cancers … only we want to bring it to every pediatric neurology waiting room in the country.

Lindsay, tell us briefly about your role and Laurian’s in the foundation and life beyond TNSF.

It’s pretty much me at the foundation, and a very impressive and competent board. I am the executive director and handle the day-to-day operations, as well as executing the strategic vision of the board. The foundation is my passion, but I also teach at Bar Method with a great group of ladies here in Nashville. I have three wonderful and wild boys. I would say that is a job, as well!

Laurian is the president for TNSF — the real visionary. I do wish sometimes I could jump over to Oxford and sit down with Laurian face to face. Laurian has 3 year old twins and a daughter leaving for college. To say the least, she is a busy woman. That is the beauty of the phone and email, though. When I need her vision, she is quick to step up.

Lindsay Ballew 1

Laurian Scott

Laurian, I can’t imagine a greater loss than the lives of one’s children. Having watched the moving video about your organization, I’m blown away by the courage and grace you and your husband (and your family and friends!) exhibit facing such a loss. Has establishing this foundation helped you process or shape your grief?

We lost Noah three months after we started the Foundation, but the first fundraiser was already in the works, practically upon us, and I didn’t know how to put the brakes on something with such independent, positive, fluid motion, and all in the name of our children. To this day, I think I could say the same thing. It keeps getting bigger and bigger and doing more and more good, shaping and changing the future of this disease and others, and I just don’t know how to stop it – despite the fact that it hurts. It is truly a double-edged sword. I try every day to make it up to them, to make their lives (not their deaths) a beautiful beacon of light, hope and love.

Laurian, what about advice for loved ones wanting to support friends or family going through a serious illness or loss? What acts of kindness meant the most to you in the moment?

What meant the most to me then has not changed. It’s the simple act of listening, and/or simply saying, “I’m sorry.” Reality is that nothing can be said to “make it better,” no matter how much families and friends want that to be true. Acknowledging that with a simple hug, with an apology, or saying, “I have no idea what to say to you. Please help me to help you,” is the best and most selfless way to help someone experiencing grievous loss. And for the record, time does not heal.

What’s be best part of having your sister as a business partner?

Laurian: The best part of having my sis as a business partner is that she has a deep passion for what we are doing. We often get a good laugh over the “illegal day laborer’s wage” she earns. After all, no one else would put in the amount of time, energy and thankless work that she does for little to no [financial] reward.

Lindsay: She is the visionary and I am the doer. She has the vision and I am doing my best to bring her vision to fruition. I think we are the perfect team.

What’s the best advice you’ve ever been given?

Laurian: “No one will help you until you find the gene.” This was said to me by Dr. Frangoul at Vanderbilt as I was holding my sick baby boy in my lap and begging him to help me save him. Dr. Frangoul’s words were a catalyst that motivated me to refocus my energy through TNSF to help look for the BVVL gene. Finding the gene has opened the door to be able to do research and start looking for treatments and cures. It even opened the door for me to be able to have healthy twins later.

Lindsay: There are 2 sides to every story.

Lindsay Ballew

Lindsay Ballew

What’s something you can share about each other that would be surprising to know about.

Laurian: My oldest child began calling my sister “boss” from the time she was a year old, and it quickly caught on. She’s plugged into my phone contacts as “Boss,” and even people who meet her for the first time know her as The Boss. So the Foundation gives her the perfect position to fill the role she was destined for!

Lindsay: Laurian (just “sister” to me) has amazing taste. If I need help decorating my home, I turn to her. If I need to know if a certain dress suits me, she will definitely let me know. Oh, and she can sing! She gets that from our dad. Did I also mention that she is crazy smart? But that is certainly not a hidden talent.

What event are you most looking forward to in the short term?

Laurian: I look forward to the Child Neurology Foundation’s fundraiser in Los Angeles on November 8th, where my husband and I will be accepting an award that, though it carries our name, recognizes the monumental strides of our Foundation on behalf of children with this neurological subset of diseases. It will be a great moment to demonstrate what has been and can be done when you put your heart behind something.

Lindsay: Music and Masterpieces in Nashville! We have such a great crowd every year and it’s always a fun evening. If you need some great art to fill your walls, you need to be at the barn at the Green Door Gourmet on September 20th. You get to listen to awesome music and bid on a huge selection of art … over 80 pieces! Go to our website and watch our video. You will be inspired!

Lindsay Ballew 7

Now, for a few lighter questions for our readers to get to know you better:

Describe a recent favorite meal.

Laurian: Sushi is always at the top of my list, and Jensei, located in Oxford, MS, and Birmingham, AL, is one of the best sushi restaurants ever.

Lindsay: Adele’s and Epice are my 2 favorites right now. They both have great food and a fun atmosphere.

What’s on your bedside table?

Laurian: Raising Your Spirited Child by Kurcinka

Lindsay: The Graceling Realm young adult series. (Recommended by one of SB’s wonderful posts.) I also have The Promise of a Pencil waiting to be read that one of my board members gave me.

List 3 lighthearted things you can’t live without, besides family, friends and faith.

Laurian: Travel is #1 and #2. Tied for #3 are a great book, music, coffee and wine.

Lindsay: Oh, there are so many! Desserts (as long as they don’t contain fruit), spring (after a long, cold, dark winter you can’t beat it) and vacation (the anticipation can be almost as fun as the vacation itself), and if paired with wine, all three are even better!

Lindsay Ballew 5

Thanks, Lindsay and Laurian! FOr more information on TNSF: www.thisbeandnoah.org

And, thanks Ashley Hylbert for your always-gorgeous FACES photos! For more on Ashley: ashleyhylbert.com