Muscular Dystrophy News Forums | Site-Wide Activity https://musculardystrophynews.com/forums/activity/ Activity feed for the entire site. Thu, 03 Sep 2026 19:43:29 -0500 https://buddypress.org/?v=3.4.3 en-US 30 hourly 2 e939d420cfe456b04185fb0f29e46cb1 Community Member posted an update in the group Ask Me Anything: Jello my name is glendalee Laureta I amd im from […] https://musculardystrophynews.com/forums/activity/p/9582/ Thu, 03 Sep 2026 09:12:56 -0500
  • Jello my name is glendalee Laureta I amd im from Hawaii Kauai born and raised. Growing up with the unknown rare disease in muscle Dystrophy is very over the hill beyond excitemen of course we need to get this in a my life shift.vyr the challenge and the most important part of being disabled is being kind strong minded,alert, and very…

    • Read more

    ]]>     1     4cf6dafd82c131349d7e4b0095748af7 Community Member posted an update in the group MDA AMA: Can't wait to join in 2 weeks to answer any questions […] https://musculardystrophynews.com/forums/activity/p/9578/ Wed, 02 Sep 2026 19:07:16 -0500 Can’t wait to join in 2 weeks to answer any questions you have! Feel free to drop them here or join us live!

    ]]>     0     3f3d837bf191f6ab3a65bf6af2a0d08d Community Member posted an update in the group MDA AMA: This is a test question. https://musculardystrophynews.com/forums/activity/p/9574/ Wed, 02 Sep 2026 14:34:19 -0500 This is a test question.

    ]]>     4     3384a54641e5d2e886f86780864371fd Community Member replied to the discussion Ask Me Anything in the forum Events and Activities https://musculardystrophynews.com/forums/forums/topic/ask-me-anything-3/#post-18760 Wed, 02 Sep 2026 13:55:56 -0500 Reply to Ask Me Anything

    @saif hello. Our parent company has a site specifically for SMA. While there is no cure, there are FDA approved treatments you can read about. https://smanewstoday.com/

    smanewstoday.com

    Just a moment...

    Just a moment...

    ]]>         8434e875d97bbb91b6148e108123e23b Community Member replied to the discussion Ask Me Anything in the forum Events and Activities https://musculardystrophynews.com/forums/forums/topic/ask-me-anything-3/#post-18749 Wed, 02 Sep 2026 13:53:18 -0500 Reply to Ask Me Anything

    I am from India Gujrat I have spinal muscular atrophy type 2. I need to know there is any cure for that disease if there is any cure or treatment please let me know

    ]]>         235e30075a6e2e1b671aa1c59767c51f Community Member posted an update: https://musculardystrophynews.com/forums/activity/p/9571/ Wed, 02 Sep 2026 01:13:44 -0500 0 d1f7bf49d017f270095064a074114dd0 Community Member started the discussion Thank You Cerys! in the forum Events and Activities https://musculardystrophynews.com/forums/forums/topic/thank-you-cerys/ Tue, 01 Sep 2026 11:00:00 -0500 Thank You Cerys!

    Thank you, Cerys!

    Cerys Davage, all of us at Bionews and the MD forums THANK YOU for your open and warm responses to all of our questions recently. As we all know, living with MD is not easy, but being able to share space and time with a knowing community is truly soup for the soul! 

    If you missed Cerys, her podcast, …

    Read more

    ]]>         95712264367d01822781d7f1f5effa8a Community Member posted an update: Hi Cerys:I have a question about walking and standing […] https://musculardystrophynews.com/forums/activity/p/9553/ Fri, 28 Aug 2026 22:30:32 -0500 Hi Cerys:

    I have a question about walking and standing with FSHD. I find that when I walk short distances, or stand, without using using aids, such as trekking poles or a rollator, my abs and my core muscles automatically compensate and tighten up, making the effort very strenuous. In your opinion, is this a common or unusual occurrence with…

    Read more

    ]]>     2     611328ffd20ebc40da6906635ddfb51e Community Member posted an update in the group Ask Me Anything: It’s been so fun answering your questions all week; thank […] https://musculardystrophynews.com/forums/activity/p/9551/ Fri, 28 Aug 2026 21:22:11 -0500 It’s been so fun answering your questions all week; thank you so much for taking your time to ask such insightful questions. I hope you’ve found them useful, and let’s please keep in touch on social media @cerysdavage and @unbalancedpodcast 🫶🏼 I’ll be back online tomorrow morning as I’m aware that there’s a time difference between me and you…

    Read more

    ]]>     0     5ed6d8276162912e614fce26e60f4015 Community Member posted an update in the group Ask Me Anything: @Pat had asked me a question about my diagnosis and […] https://musculardystrophynews.com/forums/activity/p/9550/ Fri, 28 Aug 2026 21:17:47 -0500 @Pat had asked me a question about my diagnosis and journey to acceptance, but after two failed attempts to post the reply in the comments, here it is:

    reply, so I’ll try again!

    I was diagnosed at 8 years old. My parents took on the impact of my diagnosis because I was so young, so I’ve kinda grown up with it and learnt to accept the changes,…

    Read more

    ]]>     1     952294ec5d02ff213512e653a2d2e232 Community Member posted an update: How do you look into mobility aid such as exoskeletons? https://musculardystrophynews.com/forums/activity/p/9545/ Fri, 28 Aug 2026 18:26:29 -0500 How do you look into mobility aid such as exoskeletons?

    ]]>     0     5510f21f772e55220a2e11233978749e Community Member posted an update in the group Ask Me Anything: What makes you feel genuinely supported by friends and family? https://musculardystrophynews.com/forums/activity/p/9544/ Fri, 28 Aug 2026 14:49:00 -0500 What makes you feel genuinely supported by friends and family?

    ]]>     1     3ae4106ed07ea6685d644c88df452084 Community Member posted an update in the group Ask Me Anything: What practical adaptations, routines, or tools have made […] https://musculardystrophynews.com/forums/activity/p/9543/ Fri, 28 Aug 2026 14:48:27 -0500 What practical adaptations, routines, or tools have made the biggest difference in your independence?

    ]]>     1     770829eb50a83cbd5adeed08122223f0 Community Member posted an update in the group Ask Me Anything: "How do you learn to accept your illness every day […] https://musculardystrophynews.com/forums/activity/p/9536/ Thu, 27 Aug 2026 20:26:00 -0500 “How do you learn to accept your illness every day (with all the ups and downs)? ” -@bettina.dasilva

    ]]>     1     18b4a9c74dffaad1729d39ec733f5370 Community Member posted an update in the group Ask Me Anything: Q: Do you have anyone advice for someone who wants to […] https://musculardystrophynews.com/forums/activity/p/9526/ Thu, 27 Aug 2026 15:27:11 -0500 Q: Do you have anyone advice for someone who wants to get involved in advocacy?

    ]]>     1     548b1a39b743a87e34362989f24294ec Community Member posted an update in the group Ask Me Anything: Q: What are your mobility aid recommendations? https://musculardystrophynews.com/forums/activity/p/9525/ Thu, 27 Aug 2026 15:26:38 -0500 Q: What are your mobility aid recommendations?

    ]]>     1     bdf2448d05a4c23a9211bc1e8c939986 Community Member posted an update in the group Ask Me Anything: Q: Do you have any advice for managing work with muscular dystrophy? https://musculardystrophynews.com/forums/activity/p/9524/ Thu, 27 Aug 2026 15:25:45 -0500 Q: Do you have any advice for managing work with muscular dystrophy?

    ]]>     1     6056d840b380aa9301089f7f2f0bb5cf Community Member posted an update in the group Ask Me Anything: Q: You have a global microphone for 30 seconds. What do […] https://musculardystrophynews.com/forums/activity/p/9522/ Thu, 27 Aug 2026 15:04:17 -0500 Q: You have a global microphone for 30 seconds. What do you tell the whole world about living with muscular dystrophy?

    ]]>     2     ab6f3981f4eea70ea6cc99c16a6dad09 Community Member posted an update in the group Ask Me Anything: How has muscular dystrophy shaped the way you think […] https://musculardystrophynews.com/forums/activity/p/9515/ Thu, 27 Aug 2026 14:37:55 -0500 How has muscular dystrophy shaped the way you think about work, independence, and adulthood?

    ]]>     1     83777ef3f51f7398e60a12b0086a2546 Community Member posted an update in the group Ask Me Anything: How do you explain your condition when you do not have […] https://musculardystrophynews.com/forums/activity/p/9514/ Thu, 27 Aug 2026 14:37:30 -0500 How do you explain your condition when you do not have the energy to educate everyone?

    ]]>     5     4b194c59726f48700bf805422e836291 Community Member posted an update in the group Ask Me Anything: What everyday tasks or situations take more planning […] https://musculardystrophynews.com/forums/activity/p/9512/ Wed, 26 Aug 2026 17:40:49 -0500 What everyday tasks or situations take more planning than people may realize?

    ]]>     2     f791499b2d6aae3a0ab4614a056a1d64 Community Member posted an update in the group Ask Me Anything: Did you ever experience grief for the future you expected […] https://musculardystrophynews.com/forums/activity/p/9508/ Wed, 26 Aug 2026 17:33:14 -0500 Did you ever experience grief for the future you expected to have? If so, how did you navigate that?

    ]]>     1     2354911fa6c2a1e6b36118e85300a76d Community Member posted an update in the group Ask Me Anything: I love sharing life hacks as someone with MD, and I’ve […] https://musculardystrophynews.com/forums/activity/p/9506/ Wed, 26 Aug 2026 17:23:05 -0500 I love sharing life hacks as someone with MD, and I’ve heard and shared some great tips recently, such as she-wees, hair styling tools and mobility aids. I’d love to know what your hacks are! Feel free to leave them in the comments 🙂

    ]]>     3     d87cf606f2960a8d0b6c541d16165a02 Community Member posted an update in the group Ask Me Anything: Hey guys! I’m so excited to be on here all week to answer […] https://musculardystrophynews.com/forums/activity/p/9504/ Tue, 25 Aug 2026 19:44:59 -0500 Hey guys! I’m so excited to be on here all week to answer any questions you may have. I’m an open book, so ask away! 🙌🏼

    ]]>     1     b06f379ebd1f1d29d626757f15f2949d Community Member posted an update in the group Ask Me Anything: Have you ever felt pressure to be positive about […] https://musculardystrophynews.com/forums/activity/p/9500/ Tue, 25 Aug 2026 17:41:44 -0500 Have you ever felt pressure to be positive about disability when you were actually having a difficult time?

    ]]>     3     cfdd4bdcb39c6ede29b4545706f0c25a Community Member posted an update in the group Ask Me Anything: The Ask Me Anything (AMA) with Cerys Davage from […] https://musculardystrophynews.com/forums/activity/p/9499/ Tue, 25 Aug 2026 17:36:52 -0500 The Ask Me Anything (AMA) with Cerys Davage from August 24th-28th is now live!

    It’s a chance to connect and ask any burning questions that have been on your mind.

    Let’s all welcome Cerys and give her lots of support as she shares. If you have questions or topic ideas for Cerys, drop them here as new posts below!

    ]]>     1     ccfba0f3a99610eaa83663bd141fe3cc Community Member posted an update in the group Ask Me Anything: How has living with muscular dystrophy affected […] https://musculardystrophynews.com/forums/activity/p/9498/ Tue, 25 Aug 2026 17:26:51 -0500 How has living with muscular dystrophy affected your friendships, dating life, or close relationships?

    ]]>     3     38aecff00c3c27174e4e83cffe09fd01 Community Member posted an update in the group Ask Me Anything: What about when they are more challenging? https://musculardystrophynews.com/forums/activity/p/9497/ Tue, 25 Aug 2026 16:35:51 -0500 What about when they are more challenging?

    ]]>     3     4bbdd06b6a417008865b988bd8a8d98e Community Member started the discussion Do you have any questions for our upcoming Ask Me Anything event? in the forum Events and Activities https://musculardystrophynews.com/forums/forums/topic/do-you-have-any-questions-for-our-upcoming-ask-me-anything-event/ Fri, 21 Aug 2026 11:00:00 -0500 Do you have any questions for our upcoming Ask Me Anything event?

    Welcome Cerys!

    Cerys Davage is a Welsh podcaster and content creator sharing what life is like as a young person living with LGMD. Her podcast, ‘Unbalanced with Cerys Davage,’ covers topics that young adults go through while uncovering the fact that our differences are superpowers! We are excited to have Cerys next week (August 24-28) join us…

    Read more

    ]]>         c12a39a453e224fe442b8063be487504 Community Member posted an update in the group MD Awareness Month: We’re excited to kick off MD Awareness Month this […] https://musculardystrophynews.com/forums/activity/p/9486/ Tue, 18 Aug 2026 21:47:18 -0500 We’re excited to kick off MD Awareness Month this September with a month-long Bingo challenge designed to help our community connect, share, and learn together.

    Grab your bingo card below!

    Here’s how it works:

    • Complete simple actions in the forums, like introducing yourself, sharing a tip, or joining a discussion.

    • Mark off each square as you…

    Read more

    ]]>     4     17df668fb06b049b7c6f8e0532949036 Community Member replied to the discussion Do you have any plans for the end of summer? in the forum Tips, Tricks, and Advice https://musculardystrophynews.com/forums/forums/topic/do-you-have-any-plans-for-the-end-of-summer/#post-18741 Mon, 17 Aug 2026 14:40:40 -0500 Reply to Do you have any plans for the end of summer?

    I have an Action Track Chair, which allows me lake access in NH!!! On a warm summer day, you will find me here!!

    ]]>         9a265209544ddf824a3791b5cbf55715 Community Member posted an update: HI, Is there any East Midlands users on the site/Forum? https://musculardystrophynews.com/forums/activity/p/9475/ Mon, 17 Aug 2026 14:29:13 -0500 HI, Is there any East Midlands users on the site/Forum?

    ]]>     1     765e2f813a2f393489ca4a7c8cfd3e46 Community Member started the discussion Do you have any plans for the end of summer? in the forum Tips, Tricks, and Advice https://musculardystrophynews.com/forums/forums/topic/do-you-have-any-plans-for-the-end-of-summer/ Mon, 17 Aug 2026 12:00:00 -0500 Do you have any plans for the end of summer?

    August can feel like you are at the top of a Ferris Wheel. It’s the time in late summer when you are paused at the top for a moment before the descent into shorter days and cooler nights. I cherish the warm days of August and enjoy time reading in the sun. 

    Do you have a late summer experience that fills your cup? Please share!

    ]]>         8f2f1e09fbff251e8f4e5744cddf888b Community Member posted an update: Hi .. new here .. first timer :) .. Any advice in […] https://musculardystrophynews.com/forums/activity/p/9469/ Fri, 14 Aug 2026 18:12:13 -0500 Hi .. new here .. first timer 🙂 .. Any advice in dealing with Canada’s S.A.P ( special access program) ?

    ]]>     3     e31b1c27646bc4f8387d7446eb677ca4 Community Member started the discussion Ask Me Anything in the forum Events and Activities https://musculardystrophynews.com/forums/forums/topic/ask-me-anything-3/ Fri, 14 Aug 2026 12:00:00 -0500 Ask Me Anything

    Have you heard? We’re hosting an Ask Me Anything (AMA) with Cerys Davage from August 24th-28th. It’s a chance to connect with a member of the Muscular Dystrophy community and ask any burning questions that have been on your mind.

    If you have questions or topic ideas for Cerys to cover once the AMA starts, drop them in the group!

    You can follow …

    Read more

    ]]>         7f5372647d4d8ada1667f25c4e446661 Community Member posted an update: My home OT and PT keep getting cancelled because the […] https://musculardystrophynews.com/forums/activity/p/9456/ Tue, 11 Aug 2026 23:20:35 -0500 My home OT and PT keep getting cancelled because the agency doesn’t want to go over a $ amount because they’re afraid of getting audited.

    I have Original Medicare and Empire.

    No one can help me. I need weekly OT and PT for the rest if my life.

    Any help here?

    ]]>     5     1d92b3570f9a04b7760346c419d5cd7c Community Member replied to the discussion How often do you think about life before MD? in the forum Living with MD https://musculardystrophynews.com/forums/forums/topic/how-often-do-you-think-about-life-before-md/#post-18730 Tue, 11 Aug 2026 18:08:40 -0500 Reply to How often do you think about life before MD?

    Happy that you can enjoy your grandkids. I am glad that you feel comfortable enough to share. Thank you!

    ]]>         6b714d496a509e685c4b8c7703b159f2 Community Member replied to the discussion How often do you think about life before MD? in the forum Living with MD https://musculardystrophynews.com/forums/forums/topic/how-often-do-you-think-about-life-before-md/#post-18729 Tue, 11 Aug 2026 17:53:45 -0500 Reply to How often do you think about life before MD?

    I feel you on both of these issues. Every time I’ve choked I’ve been with a group of people – I’m gregarious and love to chat over a meal. And I LOVE great food. But I don’t go to restaurants at all unless it’s with someone who knows my issues.

    Also, playing with my grandkids on the floor is all fun until I have to get up. They laugh when I…

    Read more

    ]]>         bd7e19fa485034a1cfdb0b10bdf0ecbe Community Member posted an update: I live in Saskatchewan Canada - far from an OPMD community […] https://musculardystrophynews.com/forums/activity/p/9450/ Tue, 11 Aug 2026 17:48:38 -0500 I live in Saskatchewan Canada – far from an OPMD community I can sit and have coffee with. As background, I have also been diagnosed with Fibromyalgia. I’m wondering if there is some level of pain that people with OPMD experience that I’m not aware of. All of my “Medical Team” tells me there isn’t pain associated with OPMD, so I’ve made a lot…

    Read more

    ]]>     0     a4e977196c55290e7a6933980a892c29 Community Member posted an update in the group Ask Me Anything: On September 15 from 1–2 p.m. ET, join us and the Muscular […] https://musculardystrophynews.com/forums/activity/p/9448/ Mon, 10 Aug 2026 17:02:57 -0500 On September 15 from 1–2 p.m. ET, join us and the Muscular Dystrophy Association for a live AMA with Brooke Smith, Senior Director of the MDA Resource Center.

    Ask about finding specialized care, connecting with MDA programs, navigating practical needs, accessing community support, locating equipment or financial resources, and understanding what…

    Read more

    ]]>     0     e3459c213fb767d72eddc147f57adee4 Community Member posted an update in the group MDA AMA: On September 15 from 1–2 p.m. ET, join us and the Muscular […] https://musculardystrophynews.com/forums/activity/p/9447/ Mon, 10 Aug 2026 17:01:01 -0500

    On September 15 from 1–2 p.m. ET, join us and the Muscular Dystrophy Association for a live AMA with Brooke Smith, Senior Director of the MDA Resource Center.

    Ask about finding specialized care, connecting with MDA programs, navigating practical needs, accessing community support, locating equipment or financial resources, and understanding what…

    Read more

    ]]>     0     8831070529f45d43543311a39deb7aef Community Member replied to the discussion How often do you think about life before MD? in the forum Living with MD https://musculardystrophynews.com/forums/forums/topic/how-often-do-you-think-about-life-before-md/#post-18727 Mon, 10 Aug 2026 14:09:46 -0500 Reply to How often do you think about life before MD?

    I relate to the eating part. For me, it is not choking, but the recent fact that I can no longer feed myself. Being in a restaurant while my wife or caregiver is feeding me gets a lot of looks from people at other tables. Although these are difficult things to admit, I am glad that you felt comfortable enough to share. 🌞

    ]]>         ed8fbe9e643eb673191f958c25608a0a Community Member replied to the discussion How often do you think about life before MD? in the forum Living with MD https://musculardystrophynews.com/forums/forums/topic/how-often-do-you-think-about-life-before-md/#post-18725 Fri, 07 Aug 2026 15:34:53 -0500 Reply to How often do you think about life before MD?

    I actually don’t think about life before MD very much. I am more concerned about my future with OPMD. One thing that I definitely think about from “before” is how I used to actually be able to get up off the ground without assistance. Now that is impossible. I either need the help of a person, a piece of furniture, or some other support. And…

    Read more

    ]]>         ad3d683294480e07309d195903e578fd Community Member posted an update: Can people with OPMD use Glp1s safely? https://musculardystrophynews.com/forums/activity/p/9441/ Thu, 06 Aug 2026 19:57:31 -0500 Can people with OPMD use Glp1s safely?

    ]]>     0     0997478bb8cb66772eb8415e75407aac Community Member started the discussion How often do you think about life before MD? in the forum Living with MD https://musculardystrophynews.com/forums/forums/topic/how-often-do-you-think-about-life-before-md/ Tue, 28 Jul 2026 12:00:00 -0500 How often do you think about life before MD?

    Many types of MD are diagnosed in late childhood or beyond. How often do you catch yourself thinking about life before MD? 

     

    Thinking about things you used to do without help can be frustrating. If I think hard enough, I can remember walking and climbing stairs, and even shaving without help. I try not to harp on these memories, but they tend…

    Read more

    ]]>         bf921f2daf7decd8752cb5e13802d97b Community Member started the discussion When did you first hear about muscular dystrophy? in the forum Diagnosis​ ​Info​ ​and​ ​General​ ​Questions https://musculardystrophynews.com/forums/forums/topic/when-did-you-first-hear-about-muscular-dystrophy/ Mon, 27 Jul 2026 12:00:00 -0500 When did you first hear about muscular dystrophy?

    I was 12, and I had no idea what ‘muscular dystrophy’ was, nor what it meant. It took me almost a decade to accept what was going on inside my body, and it’s still difficult some four decades later. 

    How old were you when you first learned about MD? Do you remember where you were and how you felt?

    ]]>         3410f317780e112e4a8d94e44ab0e627 Community Member started the discussion What advances in MD treatments do you hope to see? in the forum Living with MD https://musculardystrophynews.com/forums/forums/topic/what-advances-in-md-treatments-do-you-hope-to-see/ Fri, 24 Jul 2026 12:00:00 -0500 What advances in MD treatments do you hope to see?

    I have been living with LGMD since 1985, and so much has changed in 4 decades. DMD has several FDA-approved treatments, millions of dollars have been pouring into research, standards of care have been developed, and people are living longer and stronger with all types of MD. 

    Short of a cure, what advances do you hope to see in the next…

    Read more

    ]]>         d45dd002ce26818c417b04e53f26d6fb Community Member started the discussion Ask Me Anything! in the forum Events and Activities https://musculardystrophynews.com/forums/forums/topic/ask-me-anything/ Wed, 22 Jul 2026 12:00:00 -0500 Ask Me Anything!

    We’re hosting an Ask Me Anything (AMA) with Cerys Davage from August 24th-28th. It’s a chance to connect with a member of the Muscular dystrophy community and ask any burning questions that have been on your mind.

    Let’s all welcome Cerys Davage and give her lots of support as she shares. If you have questions or topic ideas for Cerys to…

    Read more

    ]]>         26038e119c9997054e9380d457fc8655 Community Member started the discussion Ask Me Anything in the forum Events and Activities https://musculardystrophynews.com/forums/forums/topic/ask-me-anything-2/ Tue, 21 Jul 2026 19:36:31 -0500 Ask Me Anything

    We’re hosting an Ask Me Anything (AMA) with Cerys Davage from August 24th-28th. It’s a chance to connect with a member of the Muscular dystrophy community and ask any burning questions that have been on your mind.

    Let’s all welcome Cerys Davage and give her lots of support as she shares. If you have questions or topic ideas for Cerys to…

    Read more

    ]]>         f29b2ff3e7b1bebf72c433e66512affa Community Member posted an update in the group Ask Me Anything: Have you heard? We’re hosting an Ask Me Anything (AMA) […] https://musculardystrophynews.com/forums/activity/p/9417/ Fri, 17 Jul 2026 21:11:17 -0500 Have you heard? We’re hosting an Ask Me Anything (AMA) with Cerys Davage from August 24th-28th. It’s a chance to connect with a member of the Muscular Dystrophy community and ask any burning questions that have been on your mind.

    Let’s all welcome Cerys Davage and give her lots of support as she shares. If you have questions or topic ideas for…

    Read more

    ]]>     0