The Wondrous World of Xavier Hutcherson

Donald Trump Told Me Disabled Americans "Should Just Die" Fred Trump III describes conversations with his uncle about people with intellectual and developmental disabilities

The Realities of Herbal Remedies Scientists extract treatment from traditional Kwakwaka'wakw medicine that can rescue the function of ion channel proteins. Find out more in this article

Encouraging progress, though still years away. Someday!

Brain chip helps voiceless patient communicate at 62 words per minute Using brain implants, machine learning and a predictive model, researchers decoded a woman’s attempts to speak at a rate that begins to approach natural conversation.

We don't like it we love it -- glad the power and popularity of T. Swift is shedding light on an issue not just in European concert venues but plenty in the States as well -- the second-class status disabled fans who use wheelchairs face when wanting to see their favorite artists or teams up close. The pricing of premium seating is unfair (having to pay the same for the last row in a section designated for wheelchairs as one would pay for the first row), if there is that option at all, as well as often times if someone stands up in front of the wheelchair row, those WHO CAN'T STAND have their view blocked. I really hope T. Swift & her organization helps the young woman in this article get accommodated, and then perhaps go even further and demand accessibility going forward from every venue she performs in. She has that power to make that change... and so so many would benefit.

Taylor Swift’s 2024 Milan Concert Sparks Rallying Cry in Italy Over Limited Wheelchair Access A disabled young woman who purchased a premium ticket for a Taylor Swift concert next July at Milan’s San Siro stadium is sparking a rallying cry in Italy after she was informed by organizers…

Everything in this post sounds all too familiar. This mom apparently wrote down even more if it in a book called "The Letter E." A percentage of profits from it go to the KCNQ2 Cure Alliance. We are buying it today.

How I Found Strength As A Mother To A Child With Genetic Epilepsy “Despite all the challenges and in face of all struggles, there is so much love in our house.”

Awesome! Now let's just add some strapping and a way for a caregiver to steer it...

Cory Lee has visited 40 countries on seven continents, and yet the Georgia native has never explored Cloudland Canyon State Park, about 20 minutes from his home. His wheelchair was tough enough for the trip to Antarctica but not for the rugged terrain in his backyard.

Lee’s circumstances changed Friday, when Georgia’s Department of Natural Resources and the Aimee Copeland Foundation unveiled a fleet of all-terrain power wheelchairs for rent at 11 state parks and outdoorsy destinations, including Cloudland Canyon. The Action Trackchair models are equipped with tank-like tracks capable of traversing rocks, roots, streams and sand; clearing fallen trees; plowing through tall grass; and tackling uphill climbs.

“I’ll finally be able to go on these trails for the first time in my life,” said the 32-year-old travel blogger, who shares his adventures on Curb Free With Cory Lee. “The trails are off-limits in my regular wheelchair.” https://wapo.st/3UL5zlG

Robot sleeves for kids with cerebral palsy UC Riverside engineers are developing low-cost, robotic “clothing” to help children with cerebral palsy gain control over their arm movements.

I've recently heard of Gabapentin in an entirely different context, related to myself and nerve pain, which is why this caught my attention. This goes on the list of things to inquire about at Xav's next neurology appt...

Dataset related to article "Gabapentin treatment in a patient with KCNQ2 developmental epileptic encephalopathy" De novo variants in KCNQ2 encoding for Kv7.2 voltage-dependent neuronal potassium (K+) channel subunits are associated with developmental epileptic encephalo...

New pathway to a diploma opens doors for students with disabilities For the first time, students with significant cognitive disabilities would be able to earn a high school diploma — a gateway to better jobs.

You were such a light and we loved being camp mates at Communicamp with you so many summers ago. You had such a joy for life and adventure and are so glad you got to travel the world. This is heartbreaking news and we send love and condolences to your family. R.I.P. Aidan — you will not be forgotten.

It is with tremendous sadness that we announce that Aidan’s journey in this life came to an end this morning, due to respiratory failure. We are comforted in the fact that he lived a fully enriched 19 years and 2 months of life. In those 19+ years, he joyfully spread his spirit and smile to everyone during our family’s global travels and yet also battled through many health challenges. While he never spoke a word, his smile would speak volumes and always brighten even the darkest days.
No more pain, and no more barriers! Run, jump, laugh and keep smiling, Aidan!!! ❤️❤️❤️
Dad, Connor, and I, love you eternally!!!

Linking this here to keep an eye on -- hoping it can lead to a better-tailored drug therapy for Xav -- his current anti-epilepsy meds recently had us at the endrocrinologist to suss out potentially damaging long-term effects (his labs came back ok for now -- we will watch every six months).

Zhimeng Biopharma Announces Dosing of First Subject of Its Novel Antiepileptic Drug Candidate CB03 in First-in-Human Phase I Clinical Trial /PRNewswire/ -- Shanghai Zhimeng Biopharma, Inc. ("Zhimeng"), announced dosing of the first participant in the US Phase I study in healthy subjects of its...