Last summer, Maren Anderson captivated Loudoun when a photo of the little girl in a wheelchair gazing up at an inclusive advertisement went viral.
Maren, now 5, won the region’s heart after her mom snapped a photo of her daughter, transfixed by a photo of a model in a wheelchair at Leesburg’s Ulta Beauty store.
The past year has been an intense and hopeful journey for the Anderson family as they’ve learned more about Maren’s rare genetic condition known as CACNA1A and new research offers promise of an eventual treatment.
“What the researchers are telling us—that this is treatable, it’s just a matter of time—is obviously a dream come true for any parent. … Now it’s just a matter of getting it going,” said Maren’s mom, Carolyn Anderson.
For the past year, Anderson has been working hard with other families to put CACNA1A on Americans’ radar screens and support research through a new foundation.
When the photo was taken, Maren’s diagnosis was brand new, and her family knew very little about what it would mean. The last year has been a whirlwind of processing information and making connections. Working with two other families, the Andersons launched the CACNA1A Foundation this spring to raise awareness, promote research and offer support to other families.
It all started last August when Maren and her family had gone to dinner at the Village at Leesburg with visiting grandparents. Maren, then only 4, was adjusting to her new power wheelchair and starting to get the hang of it, her mom said, cruising down the wide sidewalks in the shopping center. All of a sudden, she stopped. While Maren’s dad and sister waited at the car, Carolyn Anderson captured the powerful moment on her phone. Maren was looking up at an ad in the window of Ulta Beauty featuring model Steph Aiello who also uses a wheelchair, connecting the image with her own reality.
“We were just so proud that it was something she could see. [The wheelchair] was still new to our family,” Anderson said.
The photo went viral on social media and created a lasting connection between the Anderson family, Aiello and Ulta. It also pushed the Andersons to move forward with plans to launch the foundation. Maren’s CACNA1A gene variant had been diagnosed in the spring of 2019, after working with the Undiagnosed Diseases Network at the National Institutes of Health in Bethesda for nearly two years. The family was still in the early phases of learning about the diagnosis and making plans to move forward.
“After the Ulta photo, we started to feel urgency. We were becoming more educated,” Anderson said.
Over the years, the Andersons have learned that in the case of kids with rare conditions, there aren’t always a lot of answers. Parents often have to build their own support networks from the ground up. The Andersons joined a Facebook group for families with children with CACNA1A diagnoses and met other families ready to help launch a foundation. The Andersons worked with two other families to create the CACNA1A Foundation, which got 501(c)(3) status earlier this year and launched the cacna1a.org website earlier this month.
The foundation helps link a small but dynamic group of researchers focusing on the gene variant and also provides resources and support to families when children are diagnosed. And while there are still plenty of unanswered questions, for Anderson, the overriding sense is one of hope.
“The one consensus was [researchers] all feel like this is treatable. … Somebody just has to be able to sit down and do the research” Anderson said.
Since CACNA1A is a relatively new diagnosis, the Andersons are part of an early wave of research. The family is working with the noted geneticist Wendy Chung, director of theclinical genetics program at NewYork–Presbyterian Hospital and Columbia University Medical Center. Maren is participating in a medical natural history study, which will track her health history, along with others with the diagnosis, over time.
Carolyn Anderson is also focused on her work with the new foundation and the website, which includes patient histories to help other families find connections and answers.
“It’s kind of a road map for other children who have gone on the same journey you have. Something like that goes a long way in the world of needing support for a family who has a special needs child or a child with a disability,” Anderson said.
Anderson also manages the Miles for Maren Facebook page where friends, family and supporters can keep track of Maren’s progress and keep up with events and fundraising efforts organized by the foundation.
In the past year, the family has also built an ongoing relationship with Aiello, a model and makeup artist who has used a wheelchair following an injury to her cervical vertebrae. Last fall, Ulta flew Aiello to Loudoun where she attended a dance party fundraiser at Studio Bleu in Ashburn where Maren takes dance classes. The family invited a fun mix of friends from the disability community and typical kids and had a blast.
“It was a magical day,” Anderson said.
The Andersons are hoping to make the dance party an annual fundraiser but since COVID has put a hold on plans for in-person fundraisers, Anderson is focused on online fundraising through the foundation.
Maren is a determined and active kid, known for her infectious laugh and koala bear hugs. This fall, she begins a new chapter, starting kindergarten in Loudoun County Public Schools with her twin sister. And while the stress of COVID and the uncertainties of virtual learning are especially challenging for families of kids with disabilities, Anderson says, the family is taking things day by day and embracing the overarching sense of hope the last year has brought.
“Since hearing scientists and researchers who are deep into the field say that they feel truly that this is treatable, that just gives us an inordinate amount of hope,” Anderson said. “Just hearing those words increases our level of hope for Maren and for other kids.”
For more information about the Foundation, go to cacna1a.org. To follow Maren’s journey, go to Miles for Maren on Facebook.