Advocacy in Action: Batten Disease Awareness Day Proclamations

As International Batten Disease Awareness Day on June 9th approaches, the BDSRA Foundation spotlights Batten families who obtained a proclamation/resolution for Batten Awareness Day to be officially recognized in their state and local community. 

Read about these families’ Batten journeys and their experiences through the resolution process. 

The Stecker Family – Virginia

As told by Judy Stecker, mother of Wheeler (CLN3). 

Summarize your Batten journey up to this point and tell us about your loved one(s) with Batten disease. 

As far as we know, Wheeler is the youngest to be diagnosed with CLN3 in the world as we learned he was affected at four weeks old. As a result, we have worked tirelessly to put proactive measures into place to help him retain his functionality and coping strategies for when he becomes more symptomatic. Wheeler works to help advance the science of this disease by participating in Natural History studies at NIH and the University of Rochester Medical Center (URMC). Now five years old, Wheels is an energetic and loving little boy who likes to play with his little brother, Read, adores being outdoors, and has a mischievous and wonderful sense of humor. He’s always eager to lend a helping hand and despite sometimes struggling with big feelings is a gentle giant. (He’s only 5, but he’s the size of a 7/8 year old!)  

In which state/level of government did you obtain your Batten Awareness Day proclamation/resolution? How did you get started and how did things transpire from there?

We reached out to the Governor’s office directly and got connected with the constituent’s office.  Due to prior employment and family connections, we are fortunate to know people who work with the Governor to make the process fairly streamlined. 

Overall, how would you describe the process? What kind of challenges did you face?  

We didn’t face any challenges really. We just needed to make sure we reached out with ample time for the team there to consider and execute and followed up vigilantly to ensure it kept moving in the process.  

Who are some individuals who were most helpful to you in accomplishing this?

Craig Markva and Kimberly Barlow Tomlin were incredibly thoughtful and helpful in the Governor’s office. 

What’s one piece of advice you’d give to families looking to get a Batten Awareness Day proclamation/resolution in their states/local communities?

Don’t be afraid to ask! Use the template BDSRA provides and find the best place or person to send it to. Follow up, look on LinkedIn, and direct message there if need be. Most government offices want to recognize issues that impact their constituents. It’s just making them aware and getting to the right person. 

What are your plans for International Batten Disease Awareness Day on June 9th?

We attend Burke Community Church on Sundays and the community there has been so supportive of Wheeler and our family. 

The Thoene Family – Nebraska

As told by Terry Thoene, father of Oliver (CLN2).

Summarize your Batten journey up to this point and tell us about your loved one(s) with Batten disease. 

Back when BDSRA asked us to describe our journey in one word, that was a tough question that we didn’t know how to answer. We didn’t want to rush to answer because we definitely wanted to put some thought into it. We chose the word “perspective” because since this journey started, we’ve leaned on our faith in Jesus Christ, and he has shown us the countless blessings that have revealed themselves since this journey began. One of them is how the script of parenting Oliver has been flipped. Before he was diagnosed we imagined all kinds of life lessons that we would teach Oliver to make him a better person – it turns out he’s teaching us, and making us better people. Also, all of the regular everyday things that we highly likely would be taking for granted, we are now appreciating them so much more due to the perspective that we now have and just appreciating everyone, every single person that Oliver has encountered who has cared about him. It’s incredible to see the impact Oliver has had on all the beautiful people we are blessed to have in our lives. When a parent is blessed with a child, they want to do their best to hope their child will impact the world and make it a better place. When Stacy and I see how many lives Oliver has touched and how much good he has put into this world, it makes us very, very happy parents. 

In which state/level of government did you obtain your Batten Awareness Day proclamation/resolution? How did you get started and how did things transpire from there? 

We live in Nebraska. It was kind of a process. In August of 2023, BDSRA helped us draft a letter for representatives to help advocate for the Batten community. We used that letter to get help from U.S. Senator Pete Ricketts’s office and U.S. Congressman Mike Flood’s office to help address some concerns the Batten Community has with the FDA. To talk with them and the relatively quick response that we received went so well that we decided to keep the ball rolling and see about getting the proclamation for Nebraska. We have a neighbor who is involved in a lot of local politics, so he let us know how to go about getting the proclamation process started. In March of this year, we contacted our local state Senator Rob Clements’s office about what Oliver and everyone in the Batten Community have going on. We sent them a revised version of the proclamation draft that BDSRA provided for us. They sent that to Governor Jim Pillen’s office. A couple of days later, Governor Pillen’s office got back to us and said we would be included in a proclamation signing ceremony which ended up being on May 1st. We called every Nebraska Batten family that we knew of to join us and every one of them except for a few were able to attend the ceremony. At the ceremony, Ryker’s mom, Amy, did a really great job delivering the speech. We all met up at Alaska, Everest, and Wren’s Grandma and Grandpa’s house for brunch after. It was such a wonderful day!

Overall, how would you describe the process? What kind of challenges did you face? 

It was actually not as difficult as expected. Incredibly, everyone we asked for help from wanted to help and we got it done.

Who are some individuals who were most helpful to you in accomplishing this? 

BDSRA first and foremost, our neighbor who is involved in local politics, U.S. Senator Pete Ricketts’s office, U.S. Congressman Mike Flood’s office, our state senator Rob Clements’s office, Governor Pillen’s secretary Lana Gillming-Weber, and Governor Pillen. Carter Smith from Mike Flood’s office and Marie Woodhead from Pete Ricketts’ office joined us at the ceremony. And our Batten warriors Christine, Sarah, Brandon, Ollie E., Drew, Ryker, Dylan, Alaska, Everest, Wren, and Ollie T. were by far the biggest help!

What’s one piece of advice you’d give to families looking to get a Batten Awareness Day proclamation/resolution in their states/local communities? 

Just to call your local state senator and talk to them. We have found that when anybody we talk to after hearing about what this disease does, they want to help. Good people want to help with this once they hear about it. And we’ve found this world is very full of very good people who can help.

What are your plans for International Batten Disease Awareness Day on June 9th? 

 We will be hosting a 5K in our neighborhood. We and our neighborhood are getting very excited. Our local small town board in Eagle also passed a resolution proclaiming June 9th as Batten Disease Awareness Day. It should be fun to see all the people that want to help to spread awareness about this disease. We always appreciate how much support, advocacy, and awareness that people can give us but the least we ask from them is to just care about these kids. When people care, that gives us hope. Stacy, Oliver, and I have seen so many people from our community, his medical care, and even strangers who have made it obvious how much they care. And because of that, we consider ourselves extremely blessed.

The Timmerman Family – South Carolina

As told by Ned Timmerman, father of Jack (CLN1).

Summarize your Batten journey up to this point and tell us about your loved one with Batten disease. 

A year ago, we had never heard of Batten disease. What I knew was that our son, Jack, seven years old at the time, was having a hard time seeing. And his vision was getting worse at an alarming rate. Thus began our journey to find answers. 

Optometrist to pediatric ophthalmologist to retina specialist…We landed in the hospital with suspicion of a swollen optic nerve. Four days later, after numerous exams and an MRI, we were discharged with no answers. There was a thought that it could be a condition called Stargardt disease, and we were referred to Duke Medical Center in Durham North Carolina. It was then that we were first told that this might be something more serious and Jack had a full genetic test run. 

A few weeks later, we were told that Jack has CLN1, one of the 13 types of Batten disease. We are still processing, adapting, and learning, as we are so new to the Batten community.

Jack is the kindest, sweetest, strongest soul you could possibly meet. Not once has he complained about losing his eyesight. His smile lights up a room; we have seen him inspire so many over the last 10 months. Since his diagnosis:

• Hundreds of “We Do Hard Things” shirts were purchased in our community by people to show support for Jack. 
• Jack was the honoree of the “Go LEO” 10K with over 700 runners. 
• After a U2 concert experience at The Sphere in Las Vegas, Jack and Batten have been the subjects of two segments on U2-X Radio on Sirius XM satellite radio (Watch Segment 1 & Segment 2). 
• He was an honorary graduate of the 800th class of the Criminal Justice Academy in South Carolina and made a deputy of the Richland County Sheriff’s Department (watch an additional news story about Jack at this event here). 
• Senator Tim Scott (SC) arranged for the U.S. flag to be flown over our nation’s capitol building in honor of Jack on his birthday. That flag was sent to Jack with a commemorative certificate.
• And, a joint resolution of the South Carolina Senate and House of Representatives was passed making April 3, 2024 (Jack’s birthday) Batten Disease Awareness Day in South Carolina. 

In which state/level of government did you obtain your Batten Awareness Day proclamation/resolution? How did you get started and how did things transpire from there? Who are some individuals who were most helpful to you in accomplishing this?

It began with a simple conversation with our house representative Nathan Ballentine. At that time, I was mostly looking for assistance with Jack’s TEFRA Medicaid application, which seemed lost in the bureaucracy. His story so moved Representative Ballentine that he began the resolution process. A few phone calls later between Representative Ballentine and Senator Ronnie Cromer, combined with the persistence of Jack’s teacher, Charles McDonald, and we had a formal invitation to the state house for a reading of the resolution. 

We have certainly been blessed by the love and support of our community. They have truly rallied around Jack and our family.

What’s one piece of advice you’d give to families looking to get a Batten Awareness Day proclamation/resolution in their states/local communities?

Ever since I learned of Jack’s diagnosis, my singular focus has been to make his life matter. I am realistic that a treatment for CLN1 will likely come too late to benefit my son. But what I cannot accept is that Jack has no purpose. I intend to shout at the top of my lungs to bring awareness to Batten disease and shine a light on the love, strength, and kindness my boy spreads daily. 

For everyone on a journey like us, I can only encourage you to do the same. 

What are your plans for International Batten Disease Awareness Day on June 9th? 

As International Batten Disease Awareness Day approaches, we will as always pour every ounce into creating awareness of this brutal disease. Additionally, our family is planning a quiet, intimate ceremony at our house where we will fly the flag that flew over the United States capital at our home in honor of all those past, present, and future who have to deal with this dreadful disease. 

Finally, I can promise you that in South Carolina, one day in the future, a family will get a horrible diagnosis but when others hear that it is Batten disease, the reaction will not be, “Wasn’t there a kid a few years back with that?“ They will know about Batten disease. They will know how devastating it is. And they will remember Jack’s spirit.