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Klára Zikmundová

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@klara-zikmundova

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  • Profile picture of Kevin Schaefer

    Kevin Schaefer started the topic Day 8 of #31DaysofSMA: On Being a Wife, Mom, and Caregiver for My Spouse in the forum 31 Days of SMA 2022 2 days, 21 hours ago

    Brittany Bingman knew she wanted to get married and raise a family from a young age. She dreamed of the kind of person she would marry and the life she would have.

    While she did marry the man of her dreams, she took on an additional role that she didn’t envision. Brittany’s husband, Steve, has SMA, and she is his primary caregiver. She and…[Read more]

  • Profile picture of Kevin Schaefer

    Kevin Schaefer replied to the topic Day 2 of #31DaysofSMA: Facing My Challenges in Becoming a Mom in the forum 31 Days of SMA 2022 3 days, 22 hours ago

    Absolutely!

  • Profile picture of Kevin Schaefer

    Kevin Schaefer replied to the topic Day 1 of #31DaysofSMA: Surviving Law School While Grappling With Illness in the forum 31 Days of SMA 2022 1 week ago

    She has a focus on civil rights. @sgranby90 tagging you here.

  • Profile picture of Kevin Schaefer

    Kevin Schaefer replied to the topic Day 2 of #31DaysofSMA: Facing My Challenges in Becoming a Mom in the forum 31 Days of SMA 2022 1 week ago

    I love her story! We were on a panel together at the conference this year.

  • Profile picture of Kevin Schaefer

    Kevin Schaefer started the topic Day 3 of #31DaysofSMA: Instead of a Horse, I Got a Wheelchair in the forum 31 Days of SMA 2022 1 week ago

    Stéphanie Houvet has SMA Type 3 and lives with her parents in France. She writes about navigating adulthood, her education and career, and managing daily life.

    When she was young, Stéphanie dreamed of having a horse and learning to ride. Instead, she got a wheelchair, which became a vessel of freedom and independence for her.

    Here’s an e…[Read more]

  • Profile picture of Kevin Schaefer

    Kevin Schaefer replied to the topic Day 1 of #31DaysofSMA: Surviving Law School While Grappling With Illness in the forum 31 Days of SMA 2022 1 week, 1 day ago

    It’s a great story. I enjoyed meeting Shaniqua and many other contributors this year at the conference.

  • Profile picture of Kevin Schaefer

    Kevin Schaefer started the topic Day 1 of #31DaysofSMA: Surviving Law School While Grappling With Illness in the forum 31 Days of SMA 2022 1 week, 2 days ago

    Hey everyone, and happy SMA month!

    We’re excited to kick off our 31 Days of SMA campaign with Shaniqua Granby’s story. Shaniqua writes about her experiences in law school, and how she managed life with SMA. With the support of family and friends and with a spirit of determination, she was able to pursue her dream.

    Here’s an excerpt, “Thus, a…[Read more]

  • Profile picture of Kevin Schaefer

    Kevin Schaefer replied to the topic How do you define success? in the forum Adults ​With​ ​SMA 2 weeks, 2 days ago

    Hey Blake, great blog post! Thanks for sharing.

  • Profile picture of Kevin Schaefer

    Kevin Schaefer replied to the topic Have you seen CODA? in the forum Disability in Media 3 months, 3 weeks ago

    I finally watched CODA last night. I liked it ok but didn’t think it was amazing. Phenomenal cast and it’s a touching, feel-good coming-of-age comedy, but I get some criticisms from members of the deaf community. Like, there’s nothing wrong with telling a story from the perspective of a non-disabled family member, but it didn’t add up that they we…[Read more]

  • Profile picture of Kevin Schaefer

    Kevin Schaefer replied to the topic Dating Tips? in the forum SMA​ ​and​ ​Dating/Relationships 4 months ago

    Hey Crystal, great to hear from you!

    First off, I do think virtual dates and talking/texting are good ways to start. It gives you a chance to connect with someone first. Then you can discuss ways to meet in person. I have friends and caregivers who drive me a lot when we’re hanging out.

    Regarding an assistive device, I use my wheelchair tray for…[Read more]

  • Profile picture of Kevin Schaefer

    Kevin Schaefer replied to the topic How a Meltdown Lead to Clarity in the forum Adults ​With​ ​SMA 4 months ago

    Thanks, Blake! Yeah, it’s definitely cathartic to let it all out.

  • Profile picture of Kevin Schaefer

    Kevin Schaefer replied to the topic How a Meltdown Lead to Clarity in the forum Adults ​With​ ​SMA 4 months ago

    Thanks for sharing!

  • Profile picture of Kelly Miller

    Kelly Miller and Profile picture of Tyler DukesTyler Dukes are now friends 4 months, 1 week ago

  • Profile picture of Kevin Schaefer

    Kevin Schaefer started the topic Any SMA Gamers Out There? in the forum Disability in Media 5 months ago

    Hey everyone!

    One of our journalists is working on a story about a new video game that’s designed for young gamers with SMA. Check it out here.

    Is anyone interested in talking about this? Just send an email to Hawken Miller at [email protected]. Thanks!

  • Profile picture of Kevin Schaefer

    Kevin Schaefer started the topic Ask an Expert Survey in the forum SMA Forums Welcome Lounge 6 months ago

    Hey everyone! Hope you’re all doing well.

    SMA News Today is inviting members of the community to participate in a new survey. We are working on an initiative in which SMA experts will address a variety of topics, and we want your input! We want to know what topics you are interested in and what burning questions you’ve always wished you coul…[Read more]

  • Profile picture of Kelly Miller

    Kelly Miller replied to the topic Olympics Lacking Representation in the forum Disability in Media 6 months ago

    I’ll be honest with you, I don’t think it would be particularly helpful to the world in general. I think the only people who would notice there was a disabled person on the floor of the stadium would be other disabled people. There would be a lot of hullabaloo made over the one person who they would choose to represent. They would make a fuss and…[Read more]

  • Profile picture of Kevin Schaefer

    Kevin Schaefer replied to the topic Challenging Myself In Other Ways in the forum Adults ​With​ ​SMA 6 months, 1 week ago

    Congrats! I know something like this would be good for me. I spend way too much on books, movies, collectibles, and eating out each month.

  • Profile picture of Kelly Miller

    Kelly Miller replied to the topic Managing Medical Supplies in the forum Adults ​With​ ​SMA 6 months, 1 week ago

    I also have an overabundance of supplies for the inevitable mess ups by the DMEs. I’ve had to fight often with one of them (Edgepark) over my spc supplies. It’s a headache and I get angry b/c they can be very stupid. But for every time they messed up, my other DME (Coram) does a great job with my feeding tube stuff.

     

  • Profile picture of Kelly Miller

    Kelly Miller replied to the topic Finding Love in the forum Adults ​With​ ​SMA 6 months, 1 week ago

    I have to say that I don’t think anyone should stop with the dating sites, but they don’t have to be traditional like OKCupid or any of the others. I think everyone on here is worth talking to and has a plethora of things to say to anyone. I’ve been married for 24 1/2 yrs, and I met my husband online back when chat rooms were a big deal. There was…[Read more]

  • Profile picture of Kevin Schaefer

    Kevin Schaefer replied to the topic Finding Love in the forum Adults ​With​ ​SMA 6 months, 1 week ago

    Hey Blake, I fixed it. Thanks for sharing.

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  • Day 9 of #31DaysofSMA: Learning About the Wonders of the World by Jessie Madrigal Fletcher
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  • Day 7 of #31DaysofSMA: I Chose to Follow My Dream to Be Like Walt Disney by Jessie Madrigal Fletcher
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This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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