Tag Archives: Beyond Batten Disease Foundation

Real Women, Real Stories | Charlotte Benson: Finding Hope After My Daughter’s Devastating Diagnosis

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Charlotte Benson

Photo by Catherine Sanderson | http://www.catherinesanderson.com

Roots:  I grew up in Baton Rouge, Louisiana, and became an interior designer.  When I was 31, I moved to Paris to export antiques back to the U.S. and while living there I met and married my husband Craig who is from Little Rock, Arkansas. He said that I was the only one who could understand his French! We moved to Austin in 2002.

Family Life: We have two children, Christiane, age 12 and Garland, age 10. My entire family (3 siblings along with their children and my parents) have all moved to Austin.  We are a family of 21!

Favorite Quote: “Just when the caterpillar thought the world was over, it became a butterfly.” (Anonymous)

I’m Most Inspired By… Craig, Christiane and Garland inspire me everyday. They teach me about life and challenge me everyday in ways that inspire me to be a better person.

The Best Advice I’ve Ever Been Given:  The best advice I was ever given was not advice at all. My grandmother made an indelible impression on me without ever having offered a single opinion. I learned that the ability to make a meaningful impact on others is more about the life you live than the advice you give.

Something Most People Don’t Know About Me… This past summer, I went on a week-long overnight campout in the Teton Wilderness without ever taking a shower or washing my hair!  And I can still ride a tricycle!


My Story

Bensons Fall 2013

On March 28, 2008, my husband Craig and I received the devastating news that our daughter, Christiane had been diagnosed with a very rare neurodegenerative disease called Batten Disease. Batten Disease causes blindness, seizures, is physically and mentally incapacitating and is ultimately terminal by the late teens or early 20’s. Seven years later, it still takes my breath away to write all of that in one sentence.

What I remember about the day of her diagnosis was the shocking numbness that seemed to freeze that horrific moment and every racing emotion as we fell to our knees in disbelief and horror. While we were on our knees we began to pray. Pray for strength, direction, comfort, and sustenance. The months that followed came with the incredible support and love of our family, friends, and community, and shortly thereafter Craig and I founded Beyond Batten Disease Foundation. The foundation has become a life purpose for us and a vehicle for virtually everyone we know who wants to do something to help make a difference to channel their talents, gifts and resources to find a cure.

Christiane’s diagnosis completely changed our lives and shifted how we viewed the world. It was clear that we had a choice of how we wanted to live life in light of this news. We could either crumble in sadness and defeat or we could embrace our new role and do something to try to make a difference.

The very first effect Christiane’s diagnosis had on me as a mother, was an immediate and automatic elimination of the superfluous fluff that filled my life. It was as if an automatic sensor sifted out anything that lacked meaning and depth, and simply pushed “delete.”  I learned to be still and present with my children in a way I never had before and inhale every moment I spent with them.

I not only began to experience my children in a new light, but began to realize that God had also blessed my marriage by giving Craig and me a shared life purpose to not only care for our daughter, but also to help others through the work at our foundation. We began to experience the profound depth and unbelievable generosity of our friends and community in a way that we would never otherwise get to experience. The success of our foundation is entirely due to the compassion, pure love and sheer will of human kind to make a difference. To see up close the intuitive and passionate response of others to our own personal adversity is an extraordinary blessing. Everyone has pain and suffering, but God can use even the worst of circumstances to bring out the best in people. As we have said many times before; we have far more for which to be grateful than regretful.

I also realized that being the mother of a child with a terminal illness gave me a unique perspective and I began writing about my experiences. The unique perspective that emerged for me was not one of despair and hopelessness, but rather one of God’s incredible love and provision. I discovered that hope is a light that shines most brilliantly in dark places and that this was actually an incredible gift to unwrap and share with others. Writing has become an opportunity to share that gift and the simple truths that our precious children teach us every day. It is my hope that by sharing my stories and the light that I experience in my own dark circumstances that I will be able to encourage others to find the light that illuminates theirs.

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What is the goal of the foundation and can you tell us about the success you have had to date?  Our mission is to eradicate Batten disease and hundreds of other rare diseases like it. Today we are the leader for juvenile Batten research and have created a cohesive global research strategy. We have 30 key research projects currently underway as part of that strategy.  Over the last 6 years, $14.6 Million has been invested in research by leveraging donations, co-funding and partnerships because of our efforts.

Our success is entirely due to every single person in our community who has shared their talents and gifts and have joined our fight to save our daughter, and so many others like her.  Even though we have accomplished much in a short period of time, we still aren’t there yet!

What is the biggest piece of advice you would give someone else facing a devastating diagnosis of a child or loved one?  In the face of adversity, I think the most powerful antidote is gratitude.  I believe that focusing on the blessings in any unfortunate circumstance shapes our thoughts and ultimately creates our reality.

To read Charlotte’s stories, please visit http://beyondbatten.org/category/news/a-mothers-story/

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iGnite’s Real Women, Real Stories is a series highlighting the inspiring lives and experiences of women in our community. We hope their stories motivate and inspire you to live your life to the fullest.

Know someone who would be a great candidate for a Real Women, Real Stories feature? Email nominations to hello@igniteyourlifenow.com

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What Do You Expect, Desire, Respect and Admire?

A Road Map to Your Best Year Yet, Part IV

2015intention

Point to Ponder:
Do you have a goal, mantra or intention?

by Neissa Brown Springmann

by Neissa Brown Springmann

Whether it be a setting a goal, mantra or intention for yourself and your year, all of them are equally important — IF you want a little say in your life.   Here’s why: we’ve all heard these sayings before: “Don’t exist, live!”; “Become intentional about what you want out of life or else life will happen to you.” and “Don’t wait on the opportunity, create it!”  We do have a good bit of control over what life gives us, which is not to say that life won’t at times spin us around, turn us upside down and completely overwhelm and disappoint us. However, the law of attraction is at play every second of the day, and we reap what we sow. So, it’s essential that we are specific and intentional about what we are sowing and what we want out of life. Taking the time to determine these things will increase our odds of getting what we want rather than leaving life to chance.

Admittedly, my goals in the past have been overwhelming because even though I thought about them and wrote them down, I had way too many. I’ve learned that less is more, meaning trying to tackle and apply more than three goals, intentions or mantras at one time is a recipe for confusion and non-accomplishment.  Last year for example, I finally got it right. I was knee-deep in what felt like literal quicksand. While trying to juggle work, a toddler and an infant, the thought of setting and trying to achieve one goal felt impossible (showering a couple of times a week and brushing my teeth everyday was as ambitious as they got!). So, I decided to be realistic about what I could do, and instead of setting a goal, I created a mantra: “I can do hard things!”  Every time I found myself feeling powerless and wanting to scream and cry (which was a lot) I repeated my mantra “I can do hard things!”  This seems simple, but my mantra became my inner dialogue and always eased my mind.  It helped me breathe, stand tall, be strong and not run away- ha (but seriously!)

Since January 4th, we’ve celebrated all of the amazing things we were able to accomplish and were grateful for in 2014; we’ve let go of our past or trying to become who we “once were”; and we’ve asked ourselves why we are interested in the particular goals we are considering setting for ourselves in 2015. And so, the last question for you this week is: what do you expect, desire, respect and admire in life? If you can answer one of those questions, you are on your way to setting a goal, mantra or intention for yourself, and we’ll take time in each class this week for you to write down one goal, mantra or intention on a special card.

Because sharing is what we do in iGnite, one of my goals is to participate in and raise money for the 5th and final Run to the Sun relay for Beyond Batten Disease Foundation which takes place April 11th/12th. Team iGnite has been created and we just won an RV for the overnight relay from Enchanted Rock to Camp Mabry!  This is no doubt a game-changing advantage! I’ll start my personal run training tomorrow 🙂  Amazingly, we also recently learned that due to the diligence in researching for a Batten disease cure, the doctors feel confident there will be a cure within Christianne Benson’s lifetime. Christianne is the precious sixth grader in Austin who in 2008 was diagnosed with juvenile Batten disease, which takes the body, mind and life of children. This news is nothing short of a miracle, but it also reminds me how important it is to be bold and set goals, for when we believe in our goals and become intentional about achieving them, anything is possible! Just imagine if the Benson family and their amazing community of friends who helped found the Beyond Batten Disease Foundation in an effort to find raise awareness, raise money and find a cure would’ve settled for the awful diagnosis and never pursued a cure. All goals are possible, but we must first have the courage to set them and have the determination and faith to achieve them, no matter how big or small.

Finally, because setting aside personal time to think about our goals and create a strategic plan for your goals, mantra or intention is very challenging, we’d love for you to join our Goals Workshop this Thursday morning or evening. It’s going to be fun, empowering, inspiring and very helpful. Plus, we want to be part of you creating the year and life you want!

Action Item:
Join us in class this week or attend our Goals Workshop so you can focus on your goal, mantra or intention.  If you don’t have one yet, ask yourself what you expect, desire, respect and admire in life. This will get your wheels turning and give you the goal, mantra and intention setting information you need.

Our Favorite Non-Profits, Round 2

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“It is not how much we do, but how much love we put into doing. It is not how much we give, but how much love we put into giving.”
– Mother Theresa

Point to Ponder:
What non-profit is special to you?

by Neissa Brown Springmann

by Neissa Brown Springmann

During a conversation a few weeks ago between my mom and I, she candidly said, “If in this day and age anyone complains of being bored, they aren’t looking hard enough because there are always people to help.” I think she’s right. For sure there are always people to help, and “in this day and age” we are fortunate to have access to so many wonderful organizations that do amazing work!

Last week I shared with you my favorite philanthropies and non-profits, and this week our leaders are sharing some of theirs. For some of us, support is through monetary contributions, and for others of us it’s our time. The important thing is that it comes from loving hearts, and that’s what matters most.

Alli’s & Sha’s Favorite: Beyond Batten Disease Foundation

default-logo“Every year for the past 4 years I have participated in an event called “Run to the Sun” to raise funds and awareness for Beyond Batten Disease Foundation, and I am passionate about this event and this cause. BBDF is a local non-profit founded by dear family friends, Charlotte and Craig Benson, on behalf of their daughter Christianne, who has this devastating rare neurological disease. In just a few short years, BBDF has made huge gains in understanding and treating Batten, along with numerous other rare childhood diseases, and is now on track to find a cure in Christianne’s lifetime! Run to the Sun is a 90-mile overnight relay from Enchanted Rock to Austin in which runners symbolically experience Christianne’s journey — running into and through the night, “blind,” sometimes “alone” (but never really), always surrounded and supported by teammates, other runners, and volunteers along the course, culminating at sunrise with a finish-line celebration where everyone crosses and “comes into the light” together. The experience is truly life changing, and the work of the foundation is too.”

Amy’s Favorite: Austin Sunshine Camp

logo“One of my favorite, lesser-known, local non-profits is Austin Sunshine Camps. The camps’ mission is to engage and empower youth through outdoor experience and education. For over 85 years, kids from Austin and surrounding areas have enjoyed summer camp free of charge. There is a neat story to the camp’s beginning: In 1928, The Young Men’s Business League(YMBL) of Austin recognized the serious community threat of youth tuberculosis and became dedicated to making a significant contribution to the solution. YMBL members established the Summer Sunshine Camps in Zilker Park to provide afflicted local youth and economically disadvantaged youth an environment in which to gain weight, grow strong, and enjoy sunshine, as it was said that sunshine could assist in curing tuberculosis. Today, Austin YMBL Sunshine Camps continue to serve youth living near or below the poverty line. The programs have expanded to include education and a mentoring component. After-school programs and tutoring are now offered to middle and high school youth, empowering them to dream big and look towards college. The camps are in the process of building a new facility at Zilker Park which will enable many more central Austin youth to succeed through education and healthy living.”

Cary’s Favorite: Marbridge

marbridge-logo“If you ever doubt the adage ‘what you give, you get,’ just hop in your car and drive till you reach Marbridge Ranch. A home for cognitively-disabled adults, Marbridge gives life to those who might otherwise struggle fiercely if they lived outside of its warm and loving doors. Donations go to support the most loving and true people anyone will ever find on this planet. They literally ‘had me at hello’ the first time I volunteered there, answering phones in the main office. Two mischievous residents knew the regular gal was out, and that a green and unsuspecting little me was the gatekeeper-in-training…in other words, I had no idea who could come and go. So these two did just that, they came — time and again, carrying mail, bluebonnet seeds, papers, you name it…just to get past me so they could have a peek into the Big Boys’ offices. My face hurt, I smiled so much that day, and I haven’t looked back. Each time I go, I am visited by an angel…that is the truest way I can think to describe it. They love, they smile, they live, they learn, they teach. It is a beautiful place. You can give in the form of financial support, but also volunteer support, and there are a million opportunities for that. If you are able to become involved…I promise, you will never look back!

Catherine’s Favorite: Austin Community College

Screen Shot 2014-12-04 at 3.07.31 PM“This past year I have really come to respect and admire the work they do at Austin Community College. With both my husband and I taking classes there this year, we’ve witnessed first-hand how focused the instructors in the career-specific courses are on truly helping prepare the students for being successful in a career and finding good jobs, as opposed to just academics for academics’ sake (which I experienced through large Universities). Growing up, I had no exposure to or respect for community colleges, and since I’ve thankfully opened my eyes and learned that ACC does awesome things for students at a price that is actually manageable for those paying for their own school that want to pursue their dreams and become everything they dream of. The career-specific course instructors we’ve encountered are truly there for helping you learn more about what that skill is like in the ‘real world’, instead of focusing on school reputation, accolades, etc. Now, as far as I’m concerned, that’s the real deal… I just really love and value that at this point in my life! I’m so thankful that my prejudice against community colleges has been exposed and proven dead wrong, because ACC (a non-profit) is awesome and serves an incredible purpose for the people that want and need it.”

Kathleen’s Favorite: Campus Crusade for Christ

Screen Shot 2014-12-04 at 3.49.30 PM“My favorite non-profit thus far has been supporting Campus Crusade for Christ right here in Austin. I have sponsored a darling couple here on staff at UT. They have made such an impact on so many young lives just down the street from me on campus. I truly believe that these UT students will be forever changed by these young men and women on staff at Cru. I was involved with Campus Crusade when I was a student at UT and it was a life-changing event for me!”

Molly’s Favorite: Susan G. Koman Foundation

Screen Shot 2014-12-04 at 3.54.58 PM“My favorite non-profit is the Susan G. Komen Foundation. I’ve known several women who have fought and won the battle with breast cancer, and several who have passed away, including my grandmother. My support of this cause is important because I wish for the doctors and researchers to find a cure so that no woman endures this pain ever again. I’ve participated in the Race for the Cure, and I love that family, friends and strangers join together to unite for this beautiful cause.”

Action Item:
Determine one way you can help support a non-profit that’s special to you during this giving season.

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