Muscular Dystrophy News Forums | Site-Wide Activity https://musculardystrophynews.com/forums/activity/ Activity feed for the entire site. Sun, 27 Sep 2026 02:38:59 -0500 https://buddypress.org/?v=3.5.0 en-US 30 hourly 2 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…

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]]> 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…

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]]> 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.

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]]> 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.

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]]> 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.

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]]> 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 0299f963da6a4e7f7149a9573ec8a112 Community Member posted an update in the group MDA AMA: Refresh your page periodically to see new posts, […] https://musculardystrophynews.com/forums/activity/p/9652/ Tue, 15 Sep 2026 17:15:11 -0500 Refresh your page periodically to see new posts, comments, and responses.

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]]> 0 43f831eb9288173c6acf4d8e3bf0662c Community Member posted an update in the group MDA AMA: Q: Does MDA offer resources on hiring and managing […] https://musculardystrophynews.com/forums/activity/p/9651/ Tue, 15 Sep 2026 17:13:11 -0500 Q: Does MDA offer resources on hiring and managing personal assistants or caregivers?

]]> 2 0a75c279d853534acd70c553a804bebd Community Member posted an update in the group MDA AMA: Q: What can I do if proposed changes to Medicare or […] https://musculardystrophynews.com/forums/activity/p/9650/ Tue, 15 Sep 2026 17:12:45 -0500 Q: What can I do if proposed changes to Medicare or Medicaid could affect my access to care?

]]> 2 6a0926c1f174ac46c7ae4d0809c2a197 Community Member posted an update in the group MDA AMA: Q: What resources does MDA offer adults with […] https://musculardystrophynews.com/forums/activity/p/9648/ Tue, 15 Sep 2026 17:12:25 -0500 Q: What resources does MDA offer adults with Duchenne planning for independent living as their care needs evolve?

]]> 3 c4f59191dbdd311409c2f502163ebedf Community Member posted an update in the group MDA AMA: Q: Is there a genetic counseling resource to help […] https://musculardystrophynews.com/forums/activity/p/9647/ Tue, 15 Sep 2026 17:11:25 -0500 Q: Is there a genetic counseling resource to help me understand inheritance risk for my grandchildren?

]]> 2 9a04b3110998bdb7179e1cb306fbd268 Community Member posted an update in the group MDA AMA: Q: Is there anything for teens or young adults? https://musculardystrophynews.com/forums/activity/p/9646/ Tue, 15 Sep 2026 17:11:06 -0500 Q: Is there anything for teens or young adults?

]]> 3 3bbdaa42983ba386b2550041834d39e6 Community Member posted an update in the group MDA AMA: Refresh your page periodically to see new posts, […] https://musculardystrophynews.com/forums/activity/p/9641/ Tue, 15 Sep 2026 17:03:52 -0500 Refresh your page periodically to see new posts, comments, and responses. New activity does not appear automatically.

]]> 0 5584b7d62c8e0f8dea12dc4c4ab5bd28 Community Member posted an update in the group MDA AMA: What are the latest news about OPMD trials of BB-301?What […] https://musculardystrophynews.com/forums/activity/p/9639/ Tue, 15 Sep 2026 16:28:19 -0500 What are the latest news about OPMD trials of BB-301?

What is the effect on legs muscles of the trial of BB-301?

]]> 5 36f035e79f01ef6019d2fc84d71b271b Community Member posted an update in the group MDA AMA: Q: How do I talk about my new diagnosis? With family […] https://musculardystrophynews.com/forums/activity/p/9637/ Tue, 15 Sep 2026 16:06:50 -0500 Q: How do I talk about my new diagnosis? With family and friends? With my employer and co-workers?

]]> 2 635e586ed473e8fcca85834828be8bec Community Member posted an update in the group MDA AMA: Q: Where can I find financial assistance for […] https://musculardystrophynews.com/forums/activity/p/9636/ Tue, 15 Sep 2026 16:06:18 -0500 Q: Where can I find financial assistance for home modifications, durable medical equipment and accessible vehicles?

]]> 2 1d1a07a15ff173ad2785c26715471a44 Community Member posted an update in the group MDA AMA: Q: Where can I connect with someone with the same diagnosis as me? https://musculardystrophynews.com/forums/activity/p/9635/ Tue, 15 Sep 2026 16:05:45 -0500 Q: Where can I connect with someone with the same diagnosis as me?

]]> 2 dad1d971aabbc633a43027760c0985db Community Member posted an update in the group MDA AMA: Q: Who do I talk to about clinical trials exploring […] https://musculardystrophynews.com/forums/activity/p/9634/ Tue, 15 Sep 2026 16:05:12 -0500 Q: Who do I talk to about clinical trials exploring existing treatments for other forms of MD?

]]> 2 da9b453efbc9f2c43d3351fa9be04816 Community Member posted an update in the group MDA AMA: Q: Who do I talk to for help navigating a slow or […] https://musculardystrophynews.com/forums/activity/p/9633/ Tue, 15 Sep 2026 16:03:49 -0500 Q: Who do I talk to for help navigating a slow or difficult diagnosis?

]]> 2 65683458bf40d3d8e6dc23a9a289900d Community Member posted an update in the group MDA AMA: We’re excited to welcome Brooke Smith, Senior Director of […] https://musculardystrophynews.com/forums/activity/p/9629/ Tue, 15 Sep 2026 15:16:21 -0500 We’re excited to welcome Brooke Smith, Senior Director of the MDA Resource Center, for Ask MDA: Finding the Right Resources and Support!

A few quick notes before we get started:

  • Refresh this Forum page regularly during the AMA to see new questions and Brooke’s latest answers.

  • Need help after the AMA? The MDA Resource Center is available…

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