What type of advocacy are you currently involved in or hoping to be?
We would love to hear and learn more about your advocacy efforts or goals.
- Fundraising
- Policy change
- Research support
- Community outreach
- Other
How did you get started? How long have you been advocating? What advice do you have for someone who is just starting off or wants to explore advocacy? What else would you like to share about your advocacy experience(s)?
I would love to be more involved in something to do with SMA and it’s impact on mental health! It’s why I joined here and decided to share about my mental health struggles because I don’t feel like it’s talked about enough how much SMA effects our mental health. There’s so many subsections within that that can be talked about. I’m still learning how to advocate for myself and others on this topic though. Jennifer Moderator, SpinalMuscularAtrophy.net
I’ve kind of grown tired of advocacy. I think it’s important but sometimes I feel worn down. That said, my interest these days is policy change. There’s never been a better time for people with SMA to find employment. But we need caregivers and we need to be allowed to earn income without the endless hoops and red tape. So right now I’m interested in these:
- Increasing access to caregivers
- Increasing caregiver pay
- Eliminating financial tests on long-term care programs (replace with buy-in after a certain income level)
- Increasing the SSI resource limit
- Eliminating the SSI "marriage penalty"
Hey thanks for the kind words. I may have unintentionally made it sound like I do a lot of advocacy work lol. I’m not doing anything too official by way of advocacy any more (I did a bit in college). It’s just something I try to stay updated on. The Arc follows some of the legislative stuff and sends updates and occasional petitions. Other than that, there’s advocating for myself which is something that gets tiring.
But I do keep with my fellow SMA peeps on forums and Discord and help with employment and benefits questions when the the topic comes up (well, US peeps anyway).
Anyway I say "worn down" because progress on these and other issues is glacially slow sometimes. But progress does get make, so guess we just gotta hang in there!It sounds like you’re doing more than you give yourself credit for—staying informed, helping others with employment and benefits questions, and advocating for yourself is all meaningful work. I completely get how tiring it can be, though, especially with how slow progress can feel. Advocating for myself can be one of the most exhausting parts of having SMA for me sometimes, especially with doctors! But you’re right, even slow progress is still progress, and it’s people like you who help keep things moving forward. -Jennifer SpinalMuscularAtrophy.net Team Member
