NMD United

05/10/2026

Let’s celebrate disabled moms! 💐

There are so many challenges that face mothers, and for disabled moms this is even more true.

They are showing up, caring for their children, raising kind and compassionate kids… all while living in a world that has historically told women with disabilities that they cannot or should not become mothers.

Disabled moms deserve to be celebrated and recognized! ❤️

—

ID: Graphic of mom in wheelchair, holding her child’s hand as they stroll through a garden path. Text reads “Celebrate Disabled Moms: They are showing up, caring for children, and raising a kind and compassionate generation... all while living in a world that often tells women with disabilities that they can not or should not become mothers.”

05/04/2026

For Disabled people, public transit can be challenging, funny, and both. Check out this informative and entertaining video about riding the New York City Subway from the perspective of two Disabled riders: Aubrie, one of our board members, and Peter, who has low vision.

2 likes, 1 comment. "Riding the New York City Subway"

03/02/2026

Today is .

This day recognizes and holds space to remember disabled people who were killed by their families.

Disabled people face higher rates of death due to caregiver neglect and abuse, ableist systems and policy, medical maltreatment, and more.

Disabled people deserve better.

—

Image description: Blue background with white text from NMD United that reads “Disabled people face higher rates of death due to caregiver neglect and abuse, ableist systems and policy, medical maltreatment, and more. Disabled people deserve better.”

03/01/2026

Today is Rare Disease Day.

For the NMD community, “rare” is a label that follows most of us everywhere.

Rare in medical textbooks.
Rare in research funding.
Rare in policy conversations.
Rare in rooms not built for us.

But the truth is, we are not rare to each other.

We are parents, professionals, neighbors, partners, community members, and leaders.

As adults living with neuromuscular disabilities, we are all navigating the “rare” experience of inaccessible systems, complicated care, fatigue, intimacy, ambition, grief, love, bureaucracy, and joy.

This is what fuels peer-led spaces; we can learn from and with each other.

If you’re part of this community: your lived experience is expertise.

If you’re outside it: we ask that you listen, learn, and advocate with us, not for us.

🩵🩵🩵

Image description: A collage of adults with neuromuscular disabilities. Text from NMD United reads: Most neuromuscular disabilities are classified as rare. But we are not rare to each other.

02/13/2026

Today we join the many people and communities grieving the sudden passing of our dear friend and fellow Board member, Dan Darkow. Our Board, and indeed our entire NMD United organization, has lost not only an exceptional leader, but a person whose generosity, brilliance, and energy helped shape who we are today.

Dan served as an active Board member of NMD United since 2018, which was in the early stages of the organization’s inception. He had an extraordinary ability to cut through complexity and find practical, efficient solutions when the rest of us felt stuck. Time and again, when challenges arose, he would calmly roll in, figure things out, and move us forward.

Most notably, Dan personally envisioned, built, and continually maintained the prototype of the ALEF grant administration system our organization uses today. He dedicated countless unseen hours to work that became foundational to everything we do. He accomplished so much, yet never sought attention or recognition. He simply did the work because it needed to be done and because he cared.

Dan shaped not only the systems that support our mission, but the spirit in which we carry out our work. No matter the time of day, we knew we could call on him for wisdom and perspective well beyond his years. His response time, patience, and commitment were nothing short of remarkable. He never made anyone feel burdensome for asking and met every challenge with reassurance and quiet good humor.

Beyond his immense contributions, we will miss watching Dan glide through life with what we jokingly called a bit of leprechaun magic, something difficult to describe but impossible to forget. He approached life with boldness, humor, and an infectious sense of possibility. He embraced opportunities, tackled extraordinary challenges head on, and reminded us, simply by example, to live fully and courageously.

We extend our deepest condolences to Dan’s family and loved ones, who so generously shared him with our community. While our sorrow is profound, so too is our gratitude for the time we were fortunate enough to spend working and laughing alongside him.

Dan was unequivocally a steadfast cheerleader for this organization and for each of us. We are committed to honoring his memory by continuing the work he cared so deeply about and by striving to bring the same generosity, creativity, and warmth to one another that he so naturally shared with us. Through that work and through one another, his legacy lives on in friendships that will last and in a community forever changed by his presence.

With gratitude, affection, and remembrance,
Emily Wolinsky, T.K. Small, Brooklyn Marx, Michael J. Wasser, Aubrie Lee, Kareen Zeitounzian, and Suzanne LaPrise
The Board of Directors of NMD United

01/13/2026

We want to share a quick update with our ALEF community.

We haven’t reopened grant applications yet because we’re currently working through limited funds. This pause is intentional and reflects our commitment to being thoughtful stewards of the program so it can continue supporting our community in meaningful ways. We’re actively working toward reopening applications later this year, once funding allows.

If you’re able to help, sharing ALEF’s impact, spreading the word, or encouraging donations at nmdunited.org/donate truly makes a difference.

Thank you for your patience, your trust, and for being part of this community. 💙

NMD United is a qualified, tax-exempt, non-profit organization. You can make a secure PayPal donation and a difference in people's lives here.

12/18/2025

NMD United's Gift Guide.
Created by and for adults living with neuromuscular disabilities.

1) For people who love heat 🔥

Adults with NMD often feel cold more easily because reduced muscle mass means less natural insulation for our bones. Warmth isn’t a luxury — it’s regulation, comfort, and pain relief. Ex. Heated blanket or heated shawl, towel warmer, space heater with remote, hot water bottle, heated insoles or foot warmers.

2) For people who love tech 📱

Adaptive and smart technology can increase independence, reduce physical strain, and make everyday tasks more accessible for adults with NMD. Ex. Wheelchair-USB adapter, noise-canceling wireless headphones, telescoping back scratcher, voice-activated smart speaker, smart light bulbs.

3) For people who love utility ⛭

When living with NMD, functional gifts often have the biggest impact. Small adaptations can make daily routines safer, easier, and less exhausting. Ex. Bed prism glasses for reading or watching TV while lying flat, lightweight drinking glasses with handles, stabilizing or self-leveling utensils, extra-long or bendable straws, carabiners for mobility devices.

4) For people who love travel 🗺️

Traveling with NMD means leaving behind carefully adapted environments. Tools that reduce barriers and add flexibility on the road are a must-pack. Ex. Travel transfer sling, portable or disposable urinal solutions, adjustable bed risers for hotel stays, portable threshold ramp, foam wedge pillows.

5) For people who love art 🎭

Art created by people with lived experience can be deeply validating, connective, and powerful — especially when it reflects community stories of disability, identity, and resilience. Ex. Memoirs written by adults with disabilities, disability-justice essays, art made by disabled artists, subscription for audiobooks.

Feeling generous? Support a grassroots charity like NMD United. Your donation helps someone buy wheelchair batteries, fix their accessible van, or get the medical supplies they need.

Give a gift that lasts far beyond the holidays 💙 nmdunited.org/donate

ID: 7-slide carousel of the gift guide explained in caption, against a silver glittery background.

12/17/2025

Assistive technology can bring art into reality 🙌

This illustration was submitted by a community member, who received an ALEF grant for digital software that allows them to create art independently.

They said: "ALEF AT's grant approve make my art dreams more easier, thank you once again for helping me! Embrace the unknown, and rise above life's limitations."

Help fund independence at nmdunited.org/donate 💙

ID: Screenshot of a drawing software, with a white canvas that features an illustration of a character's eyes and eyebrows.

12/16/2025

If your dexterity or disability makes it difficult to spin a dreidel, use Google!

Image description: Screenshot of Google search bar “spin a dreidel” with an animated tool to spin it virtually.

12/10/2025

So often, essential equipment is not covered by insurance.

Amber, one of our ALEF grant recipients, shared this message: "ALEF grants helped me repair my wheelchair accessible vehicle and purchase needed durable medical equipment that was not covered by my insurance."

This is why we created ALEF -- our community deserves access to safe transportation and medical equipment 💙

If you want to help fund a grant for independence, go to nmdunited.org/donate

Image description: 1) Amber coming down the ramp of a grey accessible van in a power wheelchair, wearing a red and white jacket and white boots. 2) Dark blue background featuring quote from Amber, an ALEF grant recipient, described above in caption.