Articles, Newsletters, Podcasts, and Video

To Protect My Emotional Wellness, I’m Letting Myself Take a Break

By Brianna Albers / 2021-11-22
Posted in

Every Wednesday, I jump on a Zoom call with a bunch of writers and talk.

Sometimes we talk about professional things, like revisions, copy edits,

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Spinraza Delays Found Not to Directly Affect Children in Italy

By Steve Bryson PhD / 2021-11-22
Posted in

Delayed Spinraza (nusinersen) treatment due to the COVID-19 pandemic did not directly result in a worsening of symptoms in children with spinal muscular atrophy (SMA),

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Winter Survival Content List

By Will Reynolds / 2021-11-18
Posted in

So Winter is coming, as is the likelihood of another lockdown. So we’re going to need entertainment. Here’s my run down of stuff to keep

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We’re Still in a Pandemic

By Brianna Albers / 2021-11-15
Posted in

In terms of “things I was expecting,” my mom coming down with COVID-19 was not one of them.

The Albers family is notorious for doing

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Treatment Delays May Be Less Important Than Family Support

By Marisa Wexler MS / 2021-11-15
Posted in

The COVID-19 pandemic led to delays in treatment with Spinraza (nusinersen) for many children with spinal muscular atrophy (SMA). However, these delays seem to have a

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Advocacy Updates: Source of Income Bill, Chicago Booster Shots, Federal Budget Bills

By Jerome Palliser / 2021-11-09
Posted in

Advocacy Team

Advocacy@accessliving.org

(312) 640-2100

Source of Income Bill, Chicago Booster Shots, Federal Budget Bills

Access Living friends and

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Reflecting on 2 Years of SMA My Way

By Brianna Albers / 2021-11-01
Posted in

It’s strange to think that a little over two years ago, I witnessed — and participated in — the conception of SMA My Way, a

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Experiences and Advice From a Student Navigating College With SMA

By Halsey Blocher / 2021-10-29
Posted in

Life after high school leaves us with plenty of paths to choose from in our pursuit of various goals. College and careers are a few

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Action Alert: Illinois Legislators Need to End Source of Income Housing Discrimination

By Amber Smock / 2021-10-13
Posted in

Advocacy Team

Advocacy@accessliving.org

(312) 640-2100

Illinois Legislators Need to End Source of Income Housing Discrimination

Access Living friends and

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Rare Disease Diversity Coalition Awards $600K to Combat Disparities

By Shayna Korol / 2021-10-12
Posted in

The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color.

These Impact Rare Disease Solution

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