The National Scoliosis Center published a blog post on the benefits of customized braces for childhood SMA which features a picture of Max sporting his new Rigo Cheneau brace. Check it out!
The Jewish Federation of Greater Washington highlighted Max's attendance at the Bender JCC Preschool via BEAM telepresence robot as a wonderful example of the JCC's commitment to inclusion. This video they commissioned looks inside the classroom that Max attends, beautifully capturing the relationships between Max, his friends, his teachers, and the entire preschool community.
When Max told us last summer that he wanted an "orchestra" birthday party, we never dreamed that his wish would find its way to Pablo Urbina and the London City Orchestra...or that they would utilize the marvels of modern technology to give Max a personalized, virtual tour of the orchestra as a one-of-a-kind birthday gift!
We were so blown away that we just had to share it with others. Enjoy!
August is Max's birthday month. It's also SMA Awareness Month. For Max's fourth birthday, we're trying to raise $4,444 for Cure SMA (to fund more groundbreaking research and continue providing vital support to families).
Would you give $4, $44, or $444 to help Max
and others like him grow up healthy and strong?
This year Max began receiving Spinraza, the first approved treatment for SMA. The drug is a huge milestone for the SMA community, but it's also the beginning of a new leg in the race for more effective treatments and ultimately a cure. Max needs your support to get there.
Click here to make a donation to Cure SMA for Max's 4th birthday
Then please share this with anyone you know who might want to help us reach our goal!
Carolyn Y. Johnson writes on the ethics of Spinraza for The Washington Post in this article featuring Max:
Looking for a pick-me-up? Listen to Kristen tell Drew from The Midlife Commute Podcast all about life with Max and SMA!
Kristen was one of a handful of SMA community representatives invited to testify about the burdens of life with SMA before FDA representatives at this week's SMA Patient-Focused Drug Development Meeting.
Meetings like this help show how FDA decision-makers are actively listening to the patient populations affected by their decisions.
Watch her brief testimony by clicking on the video below...or read her testimony in full on the Cure SMA website.
NBC4 Washington reporter Chris Gordon (and videographer Lance Ing) helped us share our experience having Max attend the Bender JCC preschool via telepresence robot.
One of our favorite parts of the story:
Asked what he wants to be when he grows up, Max surprised his mother when he replied he wants to be a teacher like she is.
You can read the full story at NBC's website: Robot Allows Maryland Boy With Degenerative Disease to Attend School, Connect With Classmates.
Check it out! Max and a friend are on the cover of the March 2017 edition of Center Scene (the magazine of the Bender JCC of Greater Washington). The cover story describes how Max is attending the Bender JCC preschool via Beam telepresence robot.
Our gratitude to the JCC and everyone involved for helping us share this cool story more widely with the people in our neighborhood.
A BEAM of Light at the Bender Early Childhood Center
by Andrea Kronzek
“It’s fun to have Max in our class. I like that Max doesn’t bump into too many kids with his robot. The robot helps him learn with his friends at school.” —Sahil, Max’s classmate
Meet Max, a 3-year-old student at the Bender Early Childhood Center. Max has spinal muscular atrophy (SMA), a motor neuron disease which leads to degeneration of the muscles that help the body to move. Because Max’s mind and sensory nervous system are unaffected, he thinks like a typical child his age.
Kristen and Yahnatan Lasko, Max’s parents, knew that in order to help their bright, differently-abled little boy reach his full potential, they needed to find a welcoming preschool community with teachers and staff who were willing to step into unfamiliar territory. They approached the Bender JCC preschool to discuss enrolling Max.
“The administration was willing to join us on the journey and quickly set about making this a reality,” says Yahnatan.
Because respiratory infections pose a significant risk to children with neuromuscular weakness, Kristen and Yahnatan proposed a telepresence robot as the best idea for how to get Max safely into the classroom. Thanks to cutting-edge technology, Max now attends preschool at the Bender JCC via BEAM, a telepresence robot. Max’s BEAM is his daily “avatar” in the classroom; through it, he learns and interacts with the class.
“Max’s teachers, Allyson and Victoriya, prepared the class to explore what it meant to welcome someone new,” Kristen explains. “Max quickly became a beloved member of the class.”
Every day for up to two hours, Max “BEAMs” into class. He loves art, music, chasing friends (and being chased), and talking with his friends.
“We talk with Max about what he is learning in school and marvel at how the interests of the class influence what he chooses to explore at home,” Kristen remarks.
“Having Max join our class through his BEAM robot has been an incredible experience,” says Allyson Levine, Max’s teacher. “The relationship that has formed, and continues to deepen every day between Max and the other children, is inspiring. The children went from being extremely excited about having a robot in our class to simply being excited to have Max in our class. It’s as if they don’t even see the robot anymore. They are all constantly finding new ways to connect with him.”
To his classmates, Max is a good friend who has much to contribute. Eli loves being Max’s classmate. “Max helps us learn about him and his robot. I never want to take my eyes off his robot because it’s so interesting.”
Eli’s mom Elizabeth says that it’s great that we have this technology to allow kids to interact and be exposed to children with differences. “I think it’s a fantastic opportunity to meet a child they might not have otherwise met.”
Kristen and Yahnatan say they are extremely grateful that the Bender JCC Preschool has welcomed Max, helping him to learn and grow. “The Bender JCC Preschool surpassed our best hopes.”
By the same token, the Bender JCC is grateful to the Lasko family for choosing our preschool and meaningfully enriching the lives of our students, teachers and all who come in contact with Max.
Max was featured in the most recent edition of Towson University's magazine!
From Smart Tech: Beyond Limitations:
Amanda Jozkowski met [Max] when he was just a few months old. The professor of occupational therapy and occupational science knew she wanted to help Max become more independent.
While his movements and communication are limited by SMA, he is as cognitively aware and as intelligent as his peers. Jozkowski recognized that Max and children like him need smart tech systems and devices they can wear to help them communicate, get around in wheelchairs and control their environments.
To design, assess and develop this technology, she created the SMA Tiger Research Team, a collaboration among professors and graduate students from the departments of Computer and Information Sciences, and Speech-Language Pathology, along with initial financial support from the General Endowment for the Jess and Mildred Fisher College of Science and Mathematics.
The next step was obtaining additional funding from the Mid-Atlantic CIO Forum, which issues grants for information technology projects. The board unanimously approved a multi-year grant for the SMA Tiger Research Team. Calling it “a great project to support,” David Powell, CIO Forum grants facilitator, adds, “We hope that the technology can be used for other similar cases.”
Helping Max beat SMA since 2013 by raising awareness and support for research and families.