Hope for the New Year

It’s 2023, a new year and new beginnings. We asked our patient leaders to tell us about their hope for the new year for themselves and others living with spinal muscular atrophy (SMA). Here is what they had to say.

There’s something about new beginnings

Megan: There’s something about the new year and new beginnings that brings so much life to my soul. I love the thought of a fresh start and I always take the beginning of the year to reflect on what were the highlights of the year before what the lows were and what are some things I want to change. My hope for this year is to make some new connections, whether that be over the internet, through fun things like forums, Facebook groups, or Instagram, but also real-life connections. I went to the SMA conference last year for the first time in my 33 years and I met some of the most amazing people. I hope to continue to grow those relationships, meet new people, and learn from others. I have dreams and aspirations for my own personal small business and my family and I hope that this year I can start tackling some of those big goals.

Resolution: Get out and make friends

Chaz: I’d love to start to get out more, and make friends. I think I always make that same New Year’s resolution but seem to find excuses to not follow through, especially considering the state of the past 2 years. Honestly, as a high-risk person, I was scared to leave the house unless absolutely necessary. But I think the world is slowly going back to normal and, since I’m now living in a new area, it’s time to venture. Doing that can be difficult when thinking about wheelchair accessibility, crowds, and finding someone to drive me. But this year I challenge myself and all of you, too.

Making the world less ableist

Samantha: My hope for the new year for myself and others living with SMA is that we continue to make the world more accessible and less ableist. Having a disability is the world’s largest minority group. This is why advocacy and connection matter. Educating able-bodied individuals who may one day become a part of this group matters. What we are doing here in our corner of the internet matters. I hope we all feel supported in our most basic needs. I hope that support allows us to accomplish our wildest dreams. I know together we can take these unique lives we have been given and make the world better with them.

Hold on to hope for a cure

Suzanne: A cure! Of course a cure is always the first thing on all of our minds, Mike has taught me to always hold on to hope. You never know what’s going to come next on the horizon, so never give up. We are always praying for more research towards finding a cure or better treatments for people with neuromuscular disorders.

Aside from that, it would be incredible to be able to get more funding for personal care assistants. Especially in states like Oklahoma. I would also love it if more physical therapy options existed and were covered by insurance. Daily massages for all people with SMA, covered by insurance? Why not, right? That would be amazing! Having said all of that, Mike and I feel very blessed to be able to live and work together.

However, we always look for ways to improve our situation and make our lives easier and make Mike more comfortable. Recently we purchased a heating pad, it's nothing revolutionary but it’s nice on these cold winter days, especially with the circulation issues that come with having SMA. Every little bit helps, and it’s important to stay warm and comfortable, especially when dealing with a disability.

Celebrate differences

Allie: My hope for the SMA community is always that better treatments and cures are found and accessible. I am really excited about the supportive therapies that are in trials. This year and beyond, I really hope that society will work toward giving disabled individuals marriage equality where we can love and be loved without fear of losing our much-needed health services. I also hope caregivers start getting compensated better to open the field up more and help with the severe shortages that COVID has made worse. For myself, I hope to be able to reach even more people advocating on social media. I love when I get messages from people saying that I have had a positive impact on their lives, it gives me the drive to keep doing what I am doing and do it better each time. I want more of that in 2023.

Respect and access

Michaela: I hope for all of us that we can continue to access the treatments we need. But perhaps most of all, I hope for us all to have the respect we deserve, the access we deserve, and we can know that we are unconditionally worthy of those things.

Accessing Treatment

Ainaa: I am fighting to get the treatment. I hope one day I will get the treatment. I need it to improve my daily life. As I grew older I realized I lost the simple things I can do like managing myself. With my parents getting older, I do not want to burden them anymore. By getting the treatment, I hope it will help me improve my daily life. I was not hoping for a big milestone. But the smallest things like shampooing my hair will be a great achievement for me.