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Brianna Albers started the topic Columnist Writes About the Importance of SMA Friends in the forum Adults With SMA 2 days, 4 hours ago
Happy March! My friend and fellow columnist, Sherry, reminded me to rest a little while ago when I had a head cold. Our conversation reminded me of the importance of having friends who really “get” your situation, especially when it comes to SMA, so I wrote a column about it.
Can you relate? How have SMA friends impacted your life?
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Brianna Albers replied to the topic Evrysdi Denial in the forum Roche and Genentech- Evrysdi (risdiplam) 3 days ago
Several people over the age of 25 have been approved, so I’ll definitely be bringing that up.
@DeAnn – All of the letters have come from CVS! Cigna is my primary but I get prescription drug insurance through CVS Pharmacy.
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Brianna Albers started the topic Evrysdi Denial in the forum Roche and Genentech- Evrysdi (risdiplam) 1 week, 1 day ago
Hey, fam. If you follow me on Twitter, you probably know that I received the denial for Evrysdi. Their reasons for doing so are pretty ridiculous, so I wrote a thread about my experience with the application process. It would mean the world to me if you RTed it – I’m trying to get it in front of as many eyes as possible.
Any advice?
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Brianna Albers started the topic Columnist Writes About A Lifesaving Head Cold in the forum Adults With SMA 1 week, 2 days ago
Happy Tuesday! I woke up with a head cold the other day, so I canceled my seating appointment. I decided to write a column about the realization I had after the fact, which was more than welcome.
On the topic of head colds: Any tips for weathering them? My ears are literally still clogged.
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Brianna Albers started the topic Disaster Preparedness in the forum Diagnosis Information and General Questions 1 week, 6 days ago
All this talk of winter storms is making me think of our disabled fam who are probably struggling without power right now. What plans do you have in place in terms of disaster preparedness?
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Brianna Albers replied to the topic Columnist Writes About Internalized Ableism and Belonging in the forum Adults With SMA 2 weeks ago
Hey! Thanks for sharing. I can definitely see where you’re coming from – it can be frustrating when people invalidate your feelings by labeling it as an internalized ism. Personally, I believe isms manifest in vastly different ways, so it’s always important to prioritize what people think and believe about their own experiences. One of my favorite…[Read more]
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Brianna Albers replied to the topic Disability Representation in TV's "Lost" in the forum Disability in Media 2 weeks, 1 day ago
I’m so glad you feel represented by his story! That’s great. I do think it’s important to acknowledge that everyone has a different relationship with “disability,” which is what makes disability representation so difficult to pin down. I do feel a lot better about his story knowing that you identify with it, though.
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Brianna Albers replied to the topic More Evrysdi Issues in the forum Roche and Genentech- Evrysdi (risdiplam) 2 weeks, 1 day ago
I do! I spoke with them and it looks like I’m not eligible for financial assistance, so we’re going the insurance route – again. I’ll keep you updated!
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Brianna Albers replied to the topic Columnist Writes About Frozen Breakfast Food and Rediscovering Old Joys in the forum Adults With SMA 2 weeks, 1 day ago
Aw! I love this, Kelly. It really is amazing what sticks with us. Also, I gotta say – meatloaf and mashed potatoes sounds so good right now!
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Brianna Albers started the topic Disability Representation in TV's "Lost" in the forum Disability in Media 2 weeks, 1 day ago
Happy Tuesday! I’ve been rewatching “Lost” and having the time of my life, so I decided to write about John Locke, a disabled character with a controversial arc.
Have you seen “Lost”? If so, what did you think of Locke as a character?
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Brianna Albers started the topic More Evrysdi Issues in the forum Roche and Genentech- Evrysdi (risdiplam) 2 weeks, 6 days ago
It’s been a while since I updated y’all. My insurance keeps denying my appeals because I’m “on full-time vent support” (I’m not, which is clearly stated in the letter) and because we didn’t include a way to monitor my progress on the medication, even though we did. I’m starting to get pretty frustrated.
Do any of you have tips on getting…[Read more]
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Brianna Albers started the topic Columnist Writes About Frozen Breakfast Food and Rediscovering Old Joys in the forum Adults With SMA 3 weeks, 2 days ago
Happy Tuesday! My latest column took a bit of a nostalgic turn — I recently rediscovered my love of Pillsbury toaster strudels, so of course, I had to write about it!
What were some of your favorite childhood foods? Have you also turned to nostalgia during the pandemic?
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Brianna Albers started the topic Social Media Follow Thread in the forum SMA Forums Welcome Lounge 3 weeks, 6 days ago
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Brianna Albers started the topic Columnist Writes About Internalized Ableism and Belonging in the forum Adults With SMA 1 month ago
Happy February!
In honor of Sherry Toh’s first column, I decided to write about befriending her, and my experience with internalized ableism and a desire to belong. I got very personal with this piece.
Here’s an excerpt: “Of course, I was young and dumb. But ableism is never benign. Ableism is insidious and toxic and, in many cases, l…[Read more]
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Brianna Albers started the topic Vaccine? in the forum Coronavirus (COVID-19) and SMA 1 month ago
Anyone know how to figure out where you are in the vaccination queue? I thought about asking my PCP but I’m sure many people are thinking similarly.
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Brianna Albers replied to the topic Help me figure out how to celebrate graduating? in the forum Going To College When You Have SMA 1 month ago
Ugh, I’m so sorry to hear that! I honestly didn’t do much in terms of celebration – I’m pretty sure all I did was order a pie from one of my favorite restaurants 😂 Is there a dessert you could make, or a movie you could watch with loved ones?
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Brianna Albers replied to the topic Switching PCPs in the forum Adults With SMA 1 month ago
omg that’s SO RUDE. I don’t blame you for not going back!! no love lost there for SURE
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Brianna Albers changed their profile picture 1 month ago
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Brianna Albers started the topic Columnist Writes About Getting a New Wheelchair in the forum SMA Assistive Technology/Equipment 1 month, 1 week ago
Happy Tuesday! My latest column is about my new wheelchair. I’m excited, but also dreading the process of adjusting. I hate it so much!
Can you relate? What tips do you have for adapting to a new chair?
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Brianna Albers started the topic Switching PCPs in the forum Adults With SMA 1 month, 1 week ago
My PCP has been out of office for over a year and I have no idea when she’s actually going to return, so I’ve decided to switch PCPs. I have a consultation scheduled for Feb. 15. Any ideas as to questions I should ask my new doctor?
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