Muscular Dystrophy News Forums | Site-Wide Activity https://musculardystrophynews.com/forums/activity/ Activity feed for the entire site. Fri, 23 Oct 2026 15:23:01 -0500 https://buddypress.org/?v=3.5.0 en-US 30 hourly 2 c5145948ba98058bb1dd6ccb01925aaf Community Member replied to the discussion DIY Hacks for Muscular Dystrophy: Share Your Best Workaround in the forum Tips, Tricks, and Advice https://musculardystrophynews.com/forums/forums/topic/diy-hacks-for-muscular-dystrophy-share-your-best-workaround/#post-18833 Thu, 22 Oct 2026 14:03:54 -0500 Reply to DIY Hacks for Muscular Dystrophy: Share Your Best Workaround

Too quiet out here people!!! haha. Anyone want to share a hack? When I travel, I bring a rubber doorstop. This way, I can prop open the usually heavy door to the hotel room while pulling my luggage in AND going through in my power chair. OK….your turn. GO.

]]> fe2911f10ee186e4c089abd38f44fb6c Community Member started the discussion DIY Hacks for Muscular Dystrophy: Share Your Best Workaround in the forum Tips, Tricks, and Advice https://musculardystrophynews.com/forums/forums/topic/diy-hacks-for-muscular-dystrophy-share-your-best-workaround/ Wed, 21 Oct 2026 11:00:00 -0500 DIY Hacks for Muscular Dystrophy: Share Your Best Workaround

People living with muscular dystrophy are all engineers. We solve problems everyday. Necessity is the mother of invention. Take a listen to my friend Adith, who had to invent a shower chair while staying at a hotel. Do you have a personal MD hack to share? We would love to hear about it!

]]> 21b482bfa4cf123f4dd33c9c246e1bed Community Member started the discussion Caregiver Webinar in the forum Events and Activities https://musculardystrophynews.com/forums/forums/topic/caregiver-webinar/ Mon, 19 Oct 2026 16:56:01 -0500 Caregiver Webinar

Caregiving can be an important part of life with myasthenia gravis (MG), and many of the challenges families navigate extend beyond any one diagnosis.

In honor of National Family Caregivers Month, we’re inviting the MG community, including family members and caregivers, to join In This Together: Life & Caregiving with ALS, a candid round-table…

Read more

]]> 28c26d206727592a98a26d8fa3b63426 Community Member started the discussion What advice do you have for facing fear with MD? in the forum Living with MD https://musculardystrophynews.com/forums/forums/topic/what-advice-do-you-have-for-facing-fear-with-md/ Fri, 16 Oct 2026 11:00:00 -0500 What advice do you have for facing fear with MD?

All of us face our fears differently. Living life with MD comes with fear. If you are recently diagnosed and find yourself afraid, I have two nuggets of knowledge for you:


1. This disease is a marathon, not a sprint. Allow yourself the space and time to adjust to a new normal.

2. Lean into the community here on Bionews and these…

Read more

]]> 4dd27975a6e4da57bda2db1734652c03 Community Member started the discussion Do you feel like you have to mask your MD symptoms? in the forum Living with MD https://musculardystrophynews.com/forums/forums/topic/do-you-feel-like-you-have-to-mask-your-md-symptoms/ Wed, 14 Oct 2026 11:00:00 -0500 Do you feel like you have to mask your MD symptoms?

Everyone alive has to pretend sometimes. Living with MD for me means powering through days when I’m tired or don’t feel 100%. Sometimes my body is so tired, I shut it down and stop pretending to be Superman. 

 

Do you feel like you have to mask your symptoms? Are there times when you realize you can’t keep pretending and have to accept the…

Read more

]]> 7e238416bffb01dff05084d642fe0cad Community Member replied to the discussion What do you want people to see about you beyond MD? in the forum Living with MD https://musculardystrophynews.com/forums/forums/topic/what-do-you-want-people-to-see-about-you-beyond-md/#post-18819 Tue, 13 Oct 2026 13:03:38 -0500 Reply to What do you want people to see about you beyond MD?

I’m a DAD!!!

]]> 6754e53bfde6bcb86adb9c3f1433d77f Community Member started the discussion What do you want people to see about you beyond MD? in the forum Living with MD https://musculardystrophynews.com/forums/forums/topic/what-do-you-want-people-to-see-about-you-beyond-md/ Tue, 13 Oct 2026 12:59:34 -0500 What do you want people to see about you beyond MD?

Sometimes I feel like people only see my wheelchair, and therefore, my diagnosis. There is a lot more of me than that…

How about you? What do you want people to see about you beyond MD? 

 

I would love for you to share a photo or two of a hobby or an interest in your life if you are comfortable. I’ll start…

]]> 46aaa63e61469c733d45c27a4db55232 Community Member started the discussion Do you have an MD-related jump scare? in the forum Living with MD https://musculardystrophynews.com/forums/forums/topic/do-you-have-an-md-related-jump-scare/ Fri, 09 Oct 2026 12:00:00 -0500 Do you have an MD-related jump scare?

One thing I could do without is the test result waiting game. Each year I have heart and lung tests to see how, or if, my MD has progressed. The time period between the test and the results is one ‘jump scare’ that I could do without. 

Do you have an MD-related fear like this? I would love to hear from you.

]]> 4d2c82744248f4e1f2515fd589755d10 Community Member started the discussion What used to be your biggest fears about MD? in the forum Living with MD https://musculardystrophynews.com/forums/forums/topic/what-used-to-be-your-biggest-fears-about-md/ Wed, 07 Oct 2026 12:00:00 -0500 What used to be your biggest fears about MD?

When I was diagnosed, one of my biggest fears was that someday I would require a wheelchair to get around. Looking back, I learned that using a wheelchair actually fostered independence for me. 

What about you? You can answer using our forum poll below:

A. Uncertainty

B. Symptoms or changes

C. Appointments or tests

D. Telling…

Read more

]]> 0b9b4ccfb5021fb7da7439841f7c1f18 Community Member started the discussion What scary things with MD do you face anyway? in the forum Living with MD https://musculardystrophynews.com/forums/forums/topic/what-scary-things-with-md-do-you-face-anyway/ Mon, 05 Oct 2026 13:14:54 -0500 What scary things with MD do you face anyway?

Halloween is often built around imaginary fears, but illness and caregiving can bring very real ones. This month, we’re making room for the scary things our community faces anyway. 

Share something that frightened you at first, something that still feels scary, or something you now understand better. Serious, practical, and funny answers…

Read more

]]> 85cdf369e1f3c64dc4c2d879d0ecd33d Community Member posted an update: My name is Allison but I perfer to be called Allie, I am […] https://musculardystrophynews.com/forums/activity/p/9799/ Sat, 03 Oct 2026 11:50:52 -0500 My name is Allison but I perfer to be called Allie, I am a 30 year old mother to my beautiful daughter who was diagnosed with a congenital myopathy associated with tremors and a MYBPC1 gene mutation. Im here to gain more knowledge and to also share our experiences, and knowledge. Not only do we want to have a better understanding on her…

Read more

]]> 0 0cac179e9de6044e7d9aa7f717d903fe Community Member posted an update: My Superstar! 💕 https://musculardystrophynews.com/forums/activity/p/9798/ Sat, 03 Oct 2026 11:19:08 -0500 My Superstar! 💕

]]> 0 85e641cc91f1e0007545cf13b01e1f10 Community Member posted an update: Hi! New here as a caregiver and just want to gain a […] https://musculardystrophynews.com/forums/activity/p/9797/ Sat, 03 Oct 2026 11:13:18 -0500 Hi! New here as a caregiver and just want to gain a better understanding of my daughters congenital myopathy associated with tremors and a MYBPC1 gene mutation. Im also interested in learning how to cope, set boundries, and be the best caregiver for her as i can be. Because recently its been pretty rocky. Just searching for some help and…

Read more

]]> 0 55f3d6d5ff607670fa9d2081c3156951 Community Member posted an update: How do you find a good team for a 10 year old boy with DMD https://musculardystrophynews.com/forums/activity/p/9789/ Fri, 25 Sep 2026 20:48:52 -0500 How do you find a good team for a 10 year old boy with DMD

]]> 0 850c3433f18ccccb7f8e50eba9bf751d Community Member posted an update: https://musculardystrophynews.com/forums/activity/p/9786/ Wed, 23 Sep 2026 16:25:38 -0500

]]> 1 544ce82e7e02ee3338220e1ceab870c0 Community Member posted an update: Until recently I used rollator to get around my home. […] https://musculardystrophynews.com/forums/activity/p/9771/ Sat, 19 Sep 2026 18:30:16 -0500 Until recently I used rollator to get around my home. With trial error in finding ways to mange, always. None of my devices fit thru door so I get to the door and shuffle to toilet holding counter and grab bars along the way. After UTI caused me setback with inability to up out of my chair and walking stride, endurance has decreased. It’s been…

Read more

]]> 1 9e526f79174e713a24b2250c95862a7e Community Member posted an update in the group MDA AMA: A special thank you to Brooke Smith, Senior Director of the […] https://musculardystrophynews.com/forums/activity/p/9727/ Tue, 15 Sep 2026 17:59:06 -0500 A special thank you to Brooke Smith, Senior Director of the MDA Resource Center, for spending time with our community and sharing helpful guidance on finding the right resources and support.

We also appreciate everyone who took part by asking questions, reading along, and helping make this an informative conversation.

If you still need support…

Read more

]]> 0 d5c241b0ccf911bad7ea802d345bb051 Community Member posted an update in the group MDA AMA: Q: How can I better understand the difference between […] https://musculardystrophynews.com/forums/activity/p/9720/ Tue, 15 Sep 2026 17:51:31 -0500 Q: How can I better understand the difference between gene therapy, gene editing, and other genetic treatments?

]]> 2 7943245266c08a3ed76c119b1ab28afd Community Member posted an update in the group MDA AMA: Q: What should I consider when planning a trip if I rely […] https://musculardystrophynews.com/forums/activity/p/9719/ Tue, 15 Sep 2026 17:50:52 -0500 Q: What should I consider when planning a trip if I rely on mobility, respiratory, or other medical equipment?

]]> 1 82fb653e9b3dcf1a06292ae30351d82c Community Member posted an update in the group MDA AMA: Q: How can MDA help me prepare for becoming more […] https://musculardystrophynews.com/forums/activity/p/9718/ Tue, 15 Sep 2026 17:49:24 -0500 Q: How can MDA help me prepare for becoming more independent as my care needs change?

]]> 2 49a75053edb92fdaf03433207871eb65 Community Member posted an update in the group MDA AMA: Q: Where can I get help paying for mobility equipment […] https://musculardystrophynews.com/forums/activity/p/9715/ Tue, 15 Sep 2026 17:48:44 -0500 Q: Where can I get help paying for mobility equipment or other accessibility needs?


]]> 1 0e61c8f8a452a0ad9c46102e2f60003b Community Member posted an update in the group MDA AMA: Q: How can MDA help me figure out what questions to ask […] https://musculardystrophynews.com/forums/activity/p/9714/ Tue, 15 Sep 2026 17:47:23 -0500 Q: How can MDA help me figure out what questions to ask when I am still searching for a diagnosis?

]]> 1 646190b6f48e9a7f0f2203d64570b64d Community Member posted an update in the group MDA AMA: We have a few minutes left in today’s MDA AMA, so if […] https://musculardystrophynews.com/forums/activity/p/9713/ Tue, 15 Sep 2026 17:46:42 -0500 We have a few minutes left in today’s MDA AMA, so if there’s something about MD research you’ve been wondering about, now is a great time to ask.

No question is too small to ask.

You can also reply directly to any of Brooke’s answers with a follow-up question and keep the conversation going.

Keep those last questions coming!

]]> 0 5499248214d5138c9dac8479598cf38d Community Member posted an update in the group MDA AMA: Refresh your page periodically to see new posts, […] https://musculardystrophynews.com/forums/activity/p/9710/ Tue, 15 Sep 2026 17:43:33 -0500 Refresh your page periodically to see new posts, comments, and responses.

New activity does not appear automatically.

]]> 0 79358d2108430833259cea0abde83165 Community Member posted an update in the group MDA AMA: Q: How do I find out about all the things that MDA is doing? https://musculardystrophynews.com/forums/activity/p/9705/ Tue, 15 Sep 2026 17:37:20 -0500 Q: How do I find out about all the things that MDA is doing?

]]> 1 ae6278ff4b42ad016a1b5b28eede5e2e Community Member posted an update in the group MDA AMA: Q: Does MDA have any resources that can help patients […] https://musculardystrophynews.com/forums/activity/p/9702/ Tue, 15 Sep 2026 17:36:33 -0500 Q: Does MDA have any resources that can help patients living outside of the United States?

]]> 1 c1af7cd269ace6c3dad55c7c66990ab0 Community Member posted an update in the group MDA AMA: Q: What resources does MDA offer to adults with Duchenne […] https://musculardystrophynews.com/forums/activity/p/9701/ Tue, 15 Sep 2026 17:36:13 -0500 Q: What resources does MDA offer to adults with Duchenne to prepare them for conversations on dying and death?

]]> 1 f1fdf5e01eca979b05bf1dd04875da75 Community Member posted an update in the group MDA AMA: Q: What resources does MDA offer to adults with […] https://musculardystrophynews.com/forums/activity/p/9700/ Tue, 15 Sep 2026 17:35:54 -0500 Q: What resources does MDA offer to adults with Duchenne transitioning towards palliative care?

]]> 1 9c92daa2f98ffe34d306e3bbd8a00282 Community Member posted an update in the group MDA AMA: Hi, years ago MDA provided funds to help with repair […] https://musculardystrophynews.com/forums/activity/p/9698/ Tue, 15 Sep 2026 17:35:52 -0500 Hi, years ago MDA provided funds to help with repair costs to DME. Is that plan still in place? If so, how do we apply for funding assistance?

]]> 1 c248f7e706ef6b4e2c370bd8ccc3bf7d Community Member posted an update in the group MDA AMA: Q: Does MDA offer Duchenne-specific resources on body […] https://musculardystrophynews.com/forums/activity/p/9697/ Tue, 15 Sep 2026 17:35:36 -0500 Q: Does MDA offer Duchenne-specific resources on body image, confidence, consent, and sexual intimacy?

]]> 2 2da2651d3991bac7ddd7a8dacccb61eb Community Member posted an update in the group MDA AMA: Q: What resources does MDA offer to help adults […] https://musculardystrophynews.com/forums/activity/p/9695/ Tue, 15 Sep 2026 17:35:19 -0500 Q: What resources does MDA offer to help adults with Duchenne discuss sexual health, fertility, and family planning with their doctors?

]]> 3 522209a670c535accf96a1022f678128 Community Member posted an update in the group MDA AMA: Refresh your page periodically to see new posts, […] https://musculardystrophynews.com/forums/activity/p/9693/ Tue, 15 Sep 2026 17:35:00 -0500 Refresh your page periodically to see new posts, comments, and responses.

New activity does not appear automatically.

]]> 0 d2a8eea2a5f2dfccc694775e5bdb171a Community Member posted an update in the group MDA AMA: Q: What resources does MDA offer adults with […] https://musculardystrophynews.com/forums/activity/p/9691/ Tue, 15 Sep 2026 17:34:24 -0500 Q: What resources does MDA offer adults with Duchenne navigating dating, relationships, and sex?

]]> 2 b1990edfb73c14818be1744b87753922 Community Member posted an update in the group MDA AMA: Q: What international travel resources does MDA […] https://musculardystrophynews.com/forums/activity/p/9689/ Tue, 15 Sep 2026 17:34:03 -0500 Q: What international travel resources does MDA recommend for adults with Duchenne?

]]> 2 15989d3d2acb4c5a61dcb52e675653f3 Community Member posted an update in the group MDA AMA: Q: What resources does MDA offer adults with Duchenne […] https://musculardystrophynews.com/forums/activity/p/9687/ Tue, 15 Sep 2026 17:33:44 -0500 Q: What resources does MDA offer adults with Duchenne who use continuous non-invasive ventilation (NIV) and want to travel safely and independently?

]]> 2 7ed25dd3099855f9c070f179683185ff Community Member posted an update in the group MDA AMA: Q: Is there a genetics resource that can explain FSHD Type […] https://musculardystrophynews.com/forums/activity/p/9685/ Tue, 15 Sep 2026 17:33:21 -0500 Q: Is there a genetics resource that can explain FSHD Type 1 vs Type 2 and what it means for my care?

]]> 2 0212b0675f50670f4e9bcce1d18cb6b4 Community Member posted an update in the group MDA AMA: Q: Does MDA offer guidance on flying with NIV, […] https://musculardystrophynews.com/forums/activity/p/9684/ Tue, 15 Sep 2026 17:33:03 -0500 Q: Does MDA offer guidance on flying with NIV, including airline communications, obtaining approval for carrying NIV machines on-board, transferring, toileting, seating, and boarding?

]]> 2 6cc9642cc13a473582389fb596298898 Community Member posted an update in the group MDA AMA: Q: Is there guidance on whether people with different […] https://musculardystrophynews.com/forums/activity/p/9681/ Tue, 15 Sep 2026 17:32:23 -0500 Q: Is there guidance on whether people with different types of muscular dystrophy should focus on strengthening muscles or conserving muscle function?

]]> 2 ede922f1f05e4184c378401af50ffbd8 Community Member posted an update in the group MDA AMA: Q: What is on the horizon for treatments that may cure MD? https://musculardystrophynews.com/forums/activity/p/9680/ Tue, 15 Sep 2026 17:31:59 -0500 Q: What is on the horizon for treatments that may cure MD?

]]> 2 9b96c21af048decfe0469ebfe972c0eb Community Member posted an update in the group MDA AMA: Q: What resources do you have that can help […] https://musculardystrophynews.com/forums/activity/p/9679/ Tue, 15 Sep 2026 17:31:40 -0500 Q: What resources do you have that can help people understand if a genetic treatment is available for their specific condition?

]]> 2 980e36e33e1c75ed6e4c0a68cb61cc23 Community Member posted an update in the group MDA AMA: Q: Who do I talk to about insurance coverage and […] https://musculardystrophynews.com/forums/activity/p/9677/ Tue, 15 Sep 2026 17:31:18 -0500 Q: Who do I talk to about insurance coverage and financial assistance for new MD treatments?

]]> 2 eca83db6ff344079e7149e3fea87c357 Community Member posted an update in the group MDA AMA: Q: Where do I go to find out about the risks […] https://musculardystrophynews.com/forums/activity/p/9675/ Tue, 15 Sep 2026 17:30:49 -0500 Q: Where do I go to find out about the risks and considerations of gene-editing treatments?

]]> 3 ca5933ae000610f3492f75cabd75a6c9 Community Member posted an update in the group MDA AMA: Refresh your page periodically to see new posts, […] https://musculardystrophynews.com/forums/activity/p/9673/ Tue, 15 Sep 2026 17:30:24 -0500 Refresh your page periodically to see new posts, comments, and responses.

New activity does not appear automatically.

]]> 0 548bdf21c80d6bbbc2c6b46d0b3e26b9 Community Member posted an update in the group MDA AMA: Q: Who would I talk to about treatments for my diagnosis? https://musculardystrophynews.com/forums/activity/p/9671/ Tue, 15 Sep 2026 17:30:01 -0500 Q: Who would I talk to about treatments for my diagnosis?

]]> 2 c6cae79a5a7ad87eaa44a581b0fff91c Community Member posted an update in the group MDA AMA: Q: Is there a program to help women and men navigate […] https://musculardystrophynews.com/forums/activity/p/9670/ Tue, 15 Sep 2026 17:29:40 -0500 Q: Is there a program to help women and men navigate MD, since they can be impacted differently?

]]> 2 bb8c975e1439fc532acc8fe96895f1d3 Community Member posted an update in the group MDA AMA: Q: Is there a resource for someone managing MD […] https://musculardystrophynews.com/forums/activity/p/9668/ Tue, 15 Sep 2026 17:29:21 -0500 Q: Is there a resource for someone managing MD alongside other medical issues?

]]> 2 547e5ab709a604c82d60ea5515e3755d Community Member posted an update in the group MDA AMA: Q: Is there a resource on fall prevention or reducing […] https://musculardystrophynews.com/forums/activity/p/9666/ Tue, 15 Sep 2026 17:28:51 -0500 Q: Is there a resource on fall prevention or reducing injury risk for people with MD?

]]> 2 053f9f558051b597ea76672ca42bcdd9 Community Member posted an update in the group MDA AMA: Q: Is there guidance on managing infection risk or […] https://musculardystrophynews.com/forums/activity/p/9665/ Tue, 15 Sep 2026 17:28:22 -0500 Q: Is there guidance on managing infection risk or vaccine precautions for people with weakened immune function from MD?

]]> 2 9fb4a8b2567d2c00ad0938c0dc13cbe8 Community Member posted an update in the group MDA AMA: Q: “How do I go about getting my son rotating mattress? My […] https://musculardystrophynews.com/forums/activity/p/9654/ Tue, 15 Sep 2026 17:18:50 -0500 Q: “How do I go about getting my son rotating mattress? My son Tyler has Duchenne Muscular dystrophy and his current mattress is not functioning.” -@janet

]]> 2 273bd0d720424d5fdb3a020d26fc6e73 Community Member posted an update in the group MDA AMA: What's the limit on an MDA grant? https://musculardystrophynews.com/forums/activity/p/9653/ Tue, 15 Sep 2026 17:17:58 -0500 What’s the limit on an MDA grant?

]]> 2