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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 31/08/2026

Become an LGMD Awareness Ambassador: -Share awareness materials online and locally -Contact local media and community leaders -Encourage schools and healthcare organizations to participate -Share your photos, stories, and support on social media www.lgmd-info.org/toolkit/

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 27/08/2026

Time is running out! Registration for the inaugural Virtual Girdie 5K Walk / Run / Roll closes August 30. Let's make this inaugural event one to remember. lgmd-info.org/5k/

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 30/07/2026

ADVOCATE by sending a press release about LGMD Awareness Day to your local media outlets prior to the event. Your voice can help garner attention & support from the broader community. A sample release is available at lgmd-info.org/toolkit/ & scroll down to “Press Release"

lgmd-info.org

LGMD Awareness Day Toolkit - LGMD Awareness Foundation

Social Social Media Posts Help us spread the word by sharing our specially designed awareness posts on social media. Encourage your friends, family, and network to join in. "Did You Know" LGMD F...

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 30/07/2026

Join us for the inaugural Girdie 5K Walk / Run / Roll this Sept in support of the global LGMD community. Register individually or create a team with family and friends. All participants receive an official Girdie 5K T-shirt. www.lgmd-info.org/5k Registration closes 8/31.

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 24/07/2026

Join us for the inaugural Girdie 5K Walk / Run / Roll event. Sponsored by BridgeBio, this event invites individuals, families, caregivers, advocates, healthcare professionals & supporters to walk, run, or roll together to raise awareness for LGMD. lgmd-info.org/5k

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 15/07/2026

Join us for the inaugural Girdie 5K Walk / Run / Roll this September in support of the global LGMD community. Learn more here: www.lgmd-info.org/5k

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 03/06/2026

Ready to take on the challenge? Download our 30-Day LGMD Awareness Challenge checklists and commit to spreading awareness all month long—one meaningful action at a time! www.lgmd-info.org/wp-content/u... #LGMDDay2026

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 16/04/2026

Have you check out our "Spotlights" section of the website? This section shares the moving and motivational stories of individuals living with LGMD. Join us in this journey of recognition, inspiration, and gratitude. Submit your spotlight questionnaire today! www.lgmd-info.org/spotlights/

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 05/03/2026

For more info about LGMD Awareness Day, visit: www.lgmd-info.org/awareness-day/

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 19/02/2026

For more info, please visit: www.lgmd-info.org/knowledge-ba...

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 05/02/2026

The 2nd European conference on LGMD2I/R9 will be held in Denmark. For more info, visit: curelgmd2i.com/events

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 02/02/2026

For more information, please visit this link: www.lgmd-info.org/knowledge-ba...

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 27/01/2026

For more information, visit: lgmd-info.org

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 26/01/2026

Do you realize the daily challenges faced by individuals living with LGMD? To learn more about LGMD, please visit our website: www.LGMD-Info.org #TogetherWeAreStronger

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 13/01/2026

Navigating a neuromuscular disease often means managing a unique cycle of grief. Melissa’s recent presentation, 'Daily Living: Navigating Grief and Change,' hosted by the Muscular Dystrophy Association, dives deep into the emotional side of living with LGMD. www.youtube.com/watch?v=bkV2...

youtube.com

Spotlight On: Navigating Grief and Change in Neuromuscular Disease

YouTube video by MDA

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 06/01/2026

For more info, visit: www.lgmd-info.org/awareness-day/

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 09/12/2025

For many individuals who live with limb-girdle muscular dystrophy (LGMD), this is at the top of their "wish list". Visit our website to explore the various LGMD organizations that support and fund vital LGMD research. www.lgmd-info.org/knowledge-ba...

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 04/12/2025

Our LGMD Awareness Foundation Merch Shop has something for everyone on your holiday shopping list! Every purchase helps us Educate, Advocate and Celebrate our mission! lgmd-info.org/shop

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 02/12/2025

This Giving Tuesday, your support helps fuel awareness, education, and hope for the LGMD community. Your gift today ensures that LGMD-Info.org remains a trusted hub for advocacy, knowledge, and community support. 💚 Give Today: www.lgmd-info.org/donate/

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 26/11/2025

To learn more about the annual LGMD Awareness Day, visit: www.lgmd-info.org/awareness-day/

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 25/11/2025

Your generosity fuels education, resources, and hope through lgmd-info.org. Thank you for helping us uplift & empower the LGMD community. We invite you to continue helping us raise awareness and support those living with LGMD. 💚 Donate Today: lgmd-info.org/donate/

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 06/11/2025

November is Caregiver Awareness Month! 💚 Check out this new Guide For Caregivers from MDA. This great resource can be downloaded at www.mda.org/.../2024/01/...? #LGMDawareness #TogetherWeAreStronger

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 05/11/2025

For more information, visit: lgmd-info.org

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 23/10/2025

The LGMD Advocacy Bundle project bridges the gap between clinicians and patients through advocacy support while supplying helpful tools and resources for staff and patients. www.lgmd-info.org/knowledge-ba...

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 21/10/2025

#LGMDawareness can spread much faster with more individuals, from all parts of the world, through re-posts, likes, and shout outs on social media! There is great strength in awareness, understanding and unity.

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 16/10/2025

Please share to help raise awareness! 💚 To learn more about LGMD and access resources, visit our website www.lgmd-info.org #LgmdAwareness #TogetherWeAreStronger

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 07/10/2025

Living with LGMD presents unique challenges, both physically and financially. This link to our LGMD Grant Opportunities page serves as a valuable resource, offering detailed information on various grants and programs tailored to assist those with LGMD. www.lgmd-info.org/knowledge-ba...

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 01/10/2025

Thank you all for another successful LGMD Awareness Day! #togetherwearestronger

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 30/09/2025

Today is Limb-Girdle Muscular Dystrophy (LGMD) Awareness Day. Help raise awareness by sharing our posts! To learn more about LGMD, please visit our website: lgmd-info.org #LGMDawareness #LgmdDay2025

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Reposted by @lgmdawareness.bsky.social

Red de Enfermedades Raras del CSIC @rarascsic.bsky.social · 30/09/2025

🌍💜Desde la RER-CSIC Hoy nos unimos al #LGMDawarenessDay para dar visibilidad a la Distrofia Muscular de Cinturas. Recordamos que la investigación es clave para avanzar en el diagnóstico y el futuro de quienes conviven con estas patologías #EnfermedadesRaras @csic.es @lgmdawareness.bsky.social

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 29/09/2025

There is still time to submit your entry for our coloring contest! For contest info, rules and the entry form, visit: www.lgmd-info.org/toolkit/#toc... Thank you to Dooley & Associates for sponsoring our coloring contest this year!

lgmd-info.org

LGMD Awareness Day Toolkit - LGMD Awareness Foundation

Social Social Media Posts Help us spread the word by sharing our specially designed awareness posts on social media. Encourage your friends, family, and network to join in. "Did You Know" LGMD...

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 26/09/2025

Tuesday, Sept. 30 is LGMD Awareness Day! Have you completed tasks from our toolkit to help EDUCATE others about LGMD? There is still time! Visit: www.lgmd-info.org/toolkit/

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 22/09/2025

Thank you, Governor Maura Healey for the proclamation declaring September 30, 2025, as Limb-Girdle Muscular Dystrophy Awareness Day throughout the State of Massachusetts! We also thank LGMD Ambassador, Keisha L Greaves, for requesting this proclamation. #LgmdDay2025

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 18/09/2025

We love seeing you share our content! We're so inspired by your creativity. To help us keep our brand looking its best, we ask that you please not edit our logos, photos or graphics. A consistent look helps our community recognize us. thank you for your understanding & support!

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 18/09/2025

Join the LGMD Awareness Foundation in our mission to shine a global spotlight on LGMD & champion the cause for improved access to diagnosis, care & treatment for those living with this condition. Our Toolkit is designed to empower and engage our community. lgmd-info.org/toolkit/

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 12/09/2025

Help spread awareness by downloading and using our specially designed LinkedIn banners and Facebook timeline covers—invite your network to join the movement! Find them here: www.lgmd-info.org/toolkit/

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 11/09/2025

Know the FACTS about Limb-Girdle Muscular Dystrophy (LGMD) & help raise awareness! 💚 To learn more about LGMD, please visit our website: www.LGMD-Info.org #LGMDday2025 #LgmdAwareness #LgmdFacts #TogetherWeAreStronger

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 08/09/2025

Limb-Girdle Muscular Dystrophy (LGMD) can affect the heart and muscles necessary for breathing. To learn more about LGMD, please visit our website: www.LGMD-Info.org #LGMDday2025 #LgmdAwareness #LgmdFacts #TogetherWeAreStronger

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 25/08/2025

Know the FACTS about Limb-Girdle Muscular Dystrophy (LGMD) & help raise awareness! LGMD is progressive, meaning that persons affected with this disability have muscles which continue to become weaker throughout their lives. To learn more, please visit: www.LGMD-Info.org

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 19/08/2025

Time is running out to submit state proclamations for Limb Girdle Muscular Dystrophy Awareness Day. The following states have been committed to: CT, IL, IN, KS, MA, MI,NJ,NY,NC,OH,OK, PA,SC, TN,TX, WI If your state isn't listed, we need your help! www.lgmd-info.org/aware.../ini...

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 13/08/2025

If you plan on submitting an application for your state, please comment on this post and let us know the state. Time is running out to request a proclamation from your State Governor or other public representatives. We have resources that can help. Learn more at www.lgmd-info.org/aware.../ini...

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 09/08/2025

Help ADVOCATE by sending a press release about LGMD Awareness Day to your local media outlets prior to the event. Your voice can help garner attention and support from the broader community. Our sample press release is available at www.lgmd-info.org/toolkit/ #LGMDDay2025

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 04/08/2025

Help raise awareness in YOUR state! It is time to begin requesting a proclamation from your State Governor or other public representatives. Please help us spread awareness in every state! Plus, we have resources that can help you. Learn more at www.lgmd-info.org/aware.../ini...

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 30/07/2025

Limb-Girdle Muscular Dystrophy (LGMD) is known to occur among all ethnic groups. LGMD occurs in all parts of the world and can be diagnosed in women and men. Symptoms can first appear at any age – childhood, teens, adulthood. To learn more about LGMD, please visit our website: www.LGMD-Info.org

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 25/07/2025

Know the FACTS about Limb-Girdle Muscular Dystrophy (LGMD) & help raise awareness! 💚 To learn more about LGMD, please visit our website: www.LGMD-Info.org #LGMDday2025 #LgmdAwareness #LgmdFacts

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 10/07/2025

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 10/07/2025

LGMD is progressive, meaning that persons affected with this disability have muscles which continue to become weaker throughout their lives. It’s not yet possible to predict the course of LGMD in an individual. To learn more about LGMD, please visit: www.LGMD-Info.org

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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 27/06/2025

Most forms of LGMD do not affect the brain, intellect or the senses. Most people diagnosed w/LGMD can think, see, hear & feel sensations as well as those w/o MD. LGMD2S is one of the rare forms in which some cognitive impairments have occurred. To learn more, please visit: www.LGMD-Info.org

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