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.”
A local news story on the FDA approval of Spinraza, the first treatment for spinal muscular atrophy, features Max. Here are a few quotes:
Click here to watch the full video:
Max is the face of SMA research at Towson! We are very pleased to have participated with Towson University's SMA Tiger Research Team in 2016 and are looking forward to new breakthroughs in 2017!
Click the image below to learn more about SMA Research at Towson and or make a gift of financial support.
We're FINALLY ready to show off Max's amazing new powerchair!
The Permobil K450 is not the chair we thought Max was getting...it's even better! Here's how it happened.
Summer 2015: Max's 2nd birthday. We reached out to friends and family to help us get Max a power wheelchair which would enable him to drive himself. At the time, we had completely spec'ed out an order for a Permobil M300 (midwheel drive). We thought the paperwork was all submitted, but to our great surprise, it turned out we still needed a few more signatures before applying to insurance. One of those signatures was from Max's physical medicine doctor, who surprised us further when she said that she wasn't ready to sign off on it yet. She had two concerns: (1) that insurance would deny because Max was too young to safely operate a powerchair and (2) that Max would be better off with a different model than the one we were applying for.
Disappointed, we set about gathering more evidence to respond to issue #1. We had already done several trials where therapists came to our home with a special motorized platform that Max could "drive" while secured in his custom seat. It took a lot of coordination to schedule these appointments, and Max didn't really have a way to practice beforehand. We found that the video clips from these trials might be less than convincing to someone worried about safety. Furthermore, it takes a lot of learning to find a control method that works. We were worried that Max might be unfairly penalized for poor performance due to controls that weren't well-suited to his abilities (e.g. joysticks, whereas Max does better with a switch) or age-level (imagine a single switch with a complex timing synchronization requirement, like "when the arrow on the screen points right, click the switch to go right").
We set about trying to build something that would let Max practice at home. A month later, we had a prototype for controlling a power wheelchair: two switches to go three directions (right to go right, left to go left, both at the same time to go forward).
Just as we started working on an idea for adding motors to the indoor base of Max's adaptive seat, we were contacted by Lollipop Kids Foundation with some amazing news: they had a power wheelchair in their equipment closet (a Permobil C300) which would be perfect for Max!* This began a few more months of investment: replacing batteries, experimenting with various controls and head supports (some borrowed, some purchased out-of-pocket), getting the wheelchair properly adjusted just right for Max, and getting Max accommodated to using it. By the beginning of 2016, we actually had Max driving himself around our first floor in that powerchair.*
Max's physical medicine doctor was very pleased with the evidence we had generated for Max being able to safely operate a power wheelchair. But she urged us to take a look at a different model, the Permobil K450, because its unique design allowed the chair to lower all the way to the floor, and she felt this would be best for him developmentally. At first, we were skeptical. To support this lowering-to-floor feature, the K450 is a rear-wheel drive, which makes it harder to anticipate turns properly and challenging to get in and out of tight spots. Wasn't Max being able to drive himself easily more important that being able to lower himself to the floor?
We started asking around the SMA community. At first, it seemed that very few kids with a diagnosis of SMA type 1 were being recommended to get a Permobil K450. This increased our skepticism. Finally we found one family whose daughter had a K450. Their glowing review of the chair really helped to change our viewpoint. We decided to see for ourselves and scheduled the equipment company bring the chair out to our home to try it in various positions.
While the K450 was 2" wider than the C300, it still fit in our van the way Max's stroller did. However, there was no doubt that we would need to put a second door into Max's room (something we had already talked about) to get the chair in and out. Also, the handrail on the back of the K450 appeared to be an ideal mounting point for Max's many machines (something that had been a real challenge with the C300 and would not be any different with the M300). We decided to go for it. And so we spent the rest of spring and summer of redoing paperwork, sending emails, waiting, garnering more doctors' signatures, and even more waiting...
On September 15, we got the amazing news (via a letter from our health insurance) that Max's powerchair had been pre-authorized for purchase. The order was placed, and delivery was scheduled for mid-October.
The chair was delivered pre-adjusted for Max. However, there were still plenty of tweaks that needed to be made. The biggest task by far, though, was fitting all of Max's machines onto the chair. Amazingly, it only took one late night -- plus a few therapist and technician followups to "tighten up the screws" -- to get all the machines mounted onto the chair in a way that was fit for travel and convenient for caregivers. (This was no doubt due to the many lessons learned and accessories acquired for Max's Zippie Voyage stroller, his Permobil C300, and his "dune buggy" beach wagon!)
It's hard to put into words how amazing our first outing with the Permobil K450 was. We took Max to the birthday party of one of his friends. At previous birthday parties, we tended to pick a spot where Max could see all the action and settle there (because his stroller was heavy to push around and also kept him high off the ground). This time was different. With just a tap of the joystick, we were able to move Max right up into the action. It felt so empowering to us as parents to be able to lower him down to the same level as his friends. He sat next to the kids picnic table while they all ate brunch, and then he rode over to the sandbox where some other friends were playing.
At the end of the party, the kids ran to play in a pile of leaves. "Do you want to play in the leaves?" we asked Max. When he indicated yes excitedly, we drove his K450 straight for the leaf pile. One of the kids threw some leaves at Max, and he loved it, so then all his friends started throwing leaves up in the air around Max, while he just laughed and laughed. When we finally had to go, Max cried; he didn't want the fun to end. Later that day, he couldn't stop talking about playing with his friends in the leaves and his new chair.
Thank you so much to everyone who pitched in to help us make this possible to Max. Major thanks to Max's therapists who made numerous visits to ensure that everything was the way it needed to be. And a heartfelt thanks to the team at NuMotion, whose dedication to doing everything necessary to get Max his chair (and patience with our weekly email ping, much like a parent listening to their child ask over and over: "Are we there yet?") all came out justified when the chair was approved by our insurance on the first try.
To other families of children with special needs working their way through the arduous process of ordering and getting insurance approval for a power wheelchair: we hope our story is helpful. If you have any questions, please don't hesitate to contact us through this website. We especially want caregivers of trached and vented kids with degenerative neuromuscular diagnoses to know that the K450 can be an ideal platform for "on the go" living when your child's life includes an array of medical machines.
But don't take our word for it. Without further ado, here is the final product: Max's Permobil K450, "fully loaded."
Coming in 2017: Max driving his powerchair himself!
Bonus: we got the K450 just in time to incorporate it (and its movable tray) into Max's Halloween costume. Presenting...the Amazing Max-stro!
We've had some amazing nurses over the last two years. Unfortunately, we've suddenly found ourselves desperately short on nursing coverage. Our nursing agency, APNT, Inc, is working night and day to locate some new nurses in the MD/DC/VA area to work Max's case. However, we decided to add our own personal touch in hopes that we might locate some great new nurses through Max's social network!
MAX IS LOOKING FOR an LPN or RN to handle the following kinds of Max-specific duties:
These videos shows a sampling of Max's daily activities:
For more pictures and videos of Max's ongoing adventures, you can check out his Facebook page.
If you're a nurse in the MD/DC/VA area and would like to hang out with Max a few days (or nights) a week, please fill out the application at APNTinc.com!
After you've submitted your information, you can call APNT at 301-617-0083 to let them know you're interested in working on Max's case. (Be sure to mention this blog post!)