I did this 2 days ago. Wasn't too hard, they just want you to type a lot. You have to submit proof of your disability and a picture of your ID, I just sent a screenshot of my doctor's client portal that listed my conditions. They paid just a day after finishing the survey.

Link: https://apply.savvy.coop/website-feedback?ref=c44186a73885

I have been wondering this for a while and there isn't too much on it. But is Rhotacism common for people with SMA? I know it’s common with Muscular Dystrophy. I have a really hard time pronouncing the letter 'R' and sometimes I will replace the L with a 'W' but mostly the letter 'R'

For anyone who has has received Zolgensma or Spinraza--what was your experience like with their patient support program? OneGene for Zolgensma and SMA360 for Spinraza

What kind of services did they offer you? How did they help with with the prior authorization process? Any drawbacks you found?

I'm studying the role of patient support programs in getting patients access to SMA and want to understand what's out there and how people have experienced it so far. Would love to hear from anyone's experience so we can make these programs better in the future!

Hi all,

I posted on here last month, but we have improved our a specialised weekly newsletter focused on SMA, designed to keep patients, caregivers, families, and healthcare professionals informed about the latest developments. The newsletter aims to cover: 

• Recent news and research announcements
• Breakthrough treatments and FDA drug approvals
• Ongoing clinical trials
• Upcoming events and networking opportunities
• Patient support resources

My request is could you spare a few mins to have a read (currently have 3 published newsletters) and let me know your opinion on the newsletter! I'll leave the link below, and feel free to be as critical as you want, I want to make sure that it resonates and is informative for the people who need and deserve it the most.

https://spinal-muscular-atrophy.healthspotlight.io/p/weekly-spotlight-17-10-24

Thank you all so much and stay strong!

Hello again SMA community! In case you missed it, we are conducting a paid research study to help men with SMA to assess their fertility health. As of right now, we are accepting candidates who have never been and are not currently on disease modifying therapies. If you or someone you know might want to see if you qualify, please check us out at malefertilitysma.com

This woman has SMA2 and markets herself as an advocate for disabled people, particularly disabled women. Does anyone here follow her and/or have strong feelings on her?

Hey everyone, I had my spinraza infusion back in Sept. (Originally said May because I still keep forgetting it's already Oct). I have noticed my arms feeling weaker after the infusion in May, and even worse after my last one.

Since then, I have been experiencing a very sudden loss of arm strength, hand control, and a worsening of my hand tremors.

Has anyone else gone through this. I'm so scared that spinraza is no longer working for me.

I'm contacting my neurologist and trying to get an appointment, but I was curious if this is happening to anyone else

Thanks

Hi! I (f27, SMA type 2) have some questions regarding back surgery. My English isn’t great so I might not use the correct words, but I’ll try lol

In around a month I’ll have lower back surgery to remove a screw that’s loose (I had scoliosis surgery when I was 11). The surgeon said that he’d just need to cut the titanium rod (stick? Idk the correct words 😂) above the screw, so it’d be a quick and easy surgery. I’ll have my appointment with him and other doctors where I can ask these questions in a couple weeks, but I wanted to see if some of you could answer them based on your own experience.

When I had my first surgery my overall health, body etc were in better condition, I could practically fully stretch my legs, hips and arms. Now I have really severe flexion contractures everywhere (I believe that’s the right term) and I’m wondering if laying me on my stomach will even be possible. The contractures in my hips especially make me think that they won’t even be able to turn me over completely once I’m fully “asleep”.

So for people with flexion contractures like mine, have you had surgery while laying on your stomach before? How did that work? I know they have pillows and stuff, but my contractures are so bad that my body is almost always in a sitting position, even when I’m laying in bed..

I hope you guys understand what I’m trying to say and someone can share their experience with me 😂 Thanks!

Hey chat, I was wondering are there any particular Mouse that you favour more? it can be because of the click strength or the ergonomic design. So recently I bought a wireless mouse but for me it looks like I cannot click it but I can easily use this one, even though the click is software on the new one the problem is the button is sitting lower so my index finger has to travel lower than necessary and then apply the pressure where as in the wired Mouse, which I have been using for ever, the right mouse button is naturally sitting close to my index finger so I just have to bump it. My desk is a clutter of wires that is why I was going for a wireless one, if any can suggest one that might be useful for me that would be very helpful I am looking for something that connects without a dongle

Hi, my niece lives in India and have already received zolgensma on janaury 2024 shen she was 19 months. We are planning to start her on Risdiplam and recently learnt that it is very cheap in China. Has any one try buying it from China? What is the process involved?

Also how successful is it likely to be? Any research to show success rate for sma type 1 or what factor affects success?

Have a relative in Turkey who has just had a son diagnosed they will give the infusion but no gene therapy. They are looking to raise money ASAP for the treatment

Medical Equipment Fund for individuals with SMA

Taking applications until November 1st.

https://www.idiscy.foundation/equipment

Hello everyone I am 33m and have SMA type 2, I was wondering if there is any vitamin supplement that I should be taking? I read somewhere in this thred that the nutritional absorption in sma patients are comparatively low.I am from South East Asia so my diet primerly consist of rice and wheat and very little proteins. I do not get much exercise, well practically none. My doctors have not prescribed anything special except Vitamin B complex ,which was prescribed because I am diabetic and is taking metformin. frankly the awareness about the disease is pretty much low in my region. I have restarted to take carnitor because it was suggested by a doctor when I was diagnosed(at 2 years old)

I have this friend who has SMA Type 2. He is 18 and is about 5'01''. He plays with me that he doesn't mind being short since he won't be standing up anyways, lol. But this always went through my mind, will he grow more or his condition affects his height?

Hi all, 
Hope your week has started off good!

I hope that you're able to support me in my project. I am developing a specialised weekly newsletter focused on Spinal Muscular Atrophy, designed to keep patients, caregivers, families, and healthcare professionals informed about the latest developments. The newsletter aims to cover: 

• Recent news and research announcements
• Breakthrough treatments and FDA drug approvals
• Ongoing clinical trials
• Upcoming events and networking opportunities
• Patient support resources

If anyone would like me to send them the draft newsletter to fact check everything, it would be much appreciated. Thank you all so much, and stay strong!

Enjoy the rest of the week

My mother is 61 and has had issues with her muscles and spine for years. I just had a baby girl and when I did my genetic testing (I’m in California and apparently this is standard) I came back as a carrier for SMA. We gave these test results to her neurologist who referred her to a neuromuscular surgeon and they confirmed she had SMA. The last 4-5 years she has severely deteriorated. She’s always been able to walk and live like a “normal” person- not able to run since her 30s ~ but other than that a pretty regular life. In the last 4 years she has had so many tests so many MRIs etc etc … no one able to diagnose. Thanks to my test, they did the same blood test on her and were able to confirm. That’s the backstory…

Finally started Evrysdi and it nearly put her in the hospital with all the side effects so she stopped it.

Fast forward 9-10 months and she just started spinraza. Currently has had 3 doses and the third one coming up. No improvement whatsoever. Has just experienced pain and headaches after treatment. Anyone had a similar experience or have any additional feedback on taking spinraza? Shes also been trying to continue her physical therapy but has been in a lot of pain and getting really discouraged. Thank you for reading and anything you respond will be helpful

Hello! Does anyone have experience switching from negative pressure like a portalung/iron lung like machine to using a bi-pap with full face mask? What was your experience like? What did it feel like? How long has it taken for you to adjust? Any other feedback would be great!

I do not have SMA but I work for a woman who does

I have this friend who has SMA Type II. He is 18, weighs about 54lbs and is 5’ 01’’ tall. He has scoliosis but did a surgery to keep his back from curving more and got a little more straight. We going to a trip and he really wants to go on a rollercoaster in universal studios and I will feel bad if i go and he doesn’t. He takes medicine orally everyday to treat his condition, I think its called ridisplam.

Hi, I was wondering if anyone experience weakening of the eyes, ie both eye saccades and when focusing? I did som googeling and did not find any connection between weak eye muscles and sma, but why wouldnt sma possible also effects the eye muscles?

Hello, I am a 25 year old with SMA type 2 and had a power chair given to me two years ago by NUMOTION and it broke two days ago and its Labor Day weekend. How long am I gonna have to wait for the repairs? How long does it usually take on holidays

So i know this is a very hot button issue but looking for some guidance.

I am chair bound but work. I don’t qualify for state assistance because of work and resources but the home health care companies around me only work with state assistance health insurance.

I don’t know many people so i cant just up and hire someone. Cant find help through companies. Don’t have a spouse or friends really so don’t know what I’m supposed to do you know?

I don’t really want to be dependent on supports that i don’t qualify for. I don’t mind working it gives me something to live for. But no matter how much i make or how much i save it doesn’t change the fact that i cant walk and need help.

I am 13 years old and I have been taking Eurysdi for 3 years. I have the second or first type of SMA, doctors could not determine which type I have. Over these 3 years, I did not feel any improvement for myself, but rather, on the contrary, I weakened. In this community, almost everyone talks about Evrysdi in a negative way, so is there any point in welcoming him? It is worth noting that before Eurysdi I did not take any medications.

Anybody having sma type 2 from India?

Hi SMA Community, we're coordinators conducting a paid research study assessing the fertility in men with SMA ages 18-50. If you or someone you know could be interested, please check us out at malefertilitysma.com

Taking applications until November 1st.

https://www.idiscy.foundation/equipment

My girlfriend has SMA with a lower extremity dominance, and despite only having physical therapy she’s doing exceptionally well. She’s in her young adult years and still has her ability to walk, and even do a small cute hop. But she also tells me she can go on some jogs, and as of recently is working on going up and down stairs without the use of rails. She also has no problem at all getting up from a seated position. As far as her SMA-LED is going, I couldn’t be happier with how she is right now

But I’m curious if there’s anyone here with SMA-LED (I’m aware there’s a type 1 and 2 but I forgot which one she has and have to ask again) that is also on evrysdi? If so, how has it been working for you with such a rare form of an already rare disease

I’ve tried doing my own research online, but because of how rare SMA-LED is and how new evrysdi is, there isn’t much that explicitly talks about ethers coinciding with each other.

But me and my partner have been talking, and we both feel that either way it wouldn’t hurt to ask about evrysdi for her SMA-LED with her doctor (she’s also a little too scared to talk about spinraza which is why I’ve explicitly said evrysdi)