Gisteren tijdens World Duchenne Awareness Day ging mijn #documentaire ‘Samen Sterk’ in première.
Ik volgde 4 mensen met de spierziekte #Duchenne en hun families en overige zorgverleners.
Te bekijken via de link in dit artikel.
https://duchenne.nl/evenement/samen-sterk-documentaire-voor-world-duchenne-awareness-day-2025/
#WorldDuchenneAwarenessDay

Hola Titánicos, cada 7 de septiembre se celebra el día mundial de concienciación de Duchenne, este año bajo el lema "La familia: el corazón del cuidado", con el objetivo de informar y concienciar sobre la distrofia muscular de Duchenne, que afecta a unos 250.000 pacientes en todo el mundo, especialmente niños.

https://somosdisca.es/dia-de-concienciacion-sobre-la-enfermedad-de-duchenne-2025/

#díamundialdeconcienciacióndeDuchenne #distrofiamusculardeDuchenne #distrofiamuscular #enfermedaddeduchenne #Duchenne #debilidadmuscular #debilidad #salud #enfermedad #niños #saludmental #visibilidad #enferemdadrara #visibilidad #prevencion #cuidados #discapacidad #disca #disability #disabilities #titan #titanicos #itanico #gentetitanica

Día de Concienciación sobre la Enfermedad de Duchenne 2025 - Somosdisc@

Cada 7 de septiembre se celebra el día mundial de concienciación de Duchenne, este año bajo el lema "La familia: el corazón del cuidado".

Somosdisc@

The following hashtags are trending across South African Mastodon instances:

#dreamed
#challenge79
#worldduchenneday
#worldduchenneawarenessday
#duchenne
#dmd
#becker
#earlydiagnosis
#genetictesting
#familycare

Based on recent posts made by non-automated accounts. Posts with more boosts, favourites, and replies are weighted higher.

Today, on 𝗪𝗼𝗿𝗹𝗱 𝗗𝘂𝗰𝗵𝗲𝗻𝗻𝗲 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗗𝗮𝘆 (Sept 7 — 7/9 for the 79 exons of the dystrophin gene), we stand with families affected by Duchenne and Becker muscular dystrophy. These conditions are progressive genetic disorders that most often appear between ages 2–5, showing as delayed milestones, frequent falls, and weakening muscles. Raising awareness helps drive earlier screening, timely genetic testing, and faster referrals to specialist care teams—steps that improve quality of life and open access to treatments and clinical trials.

The 2025 theme, “𝗙𝗮𝗺𝗶𝗹𝘆: 𝗧𝗵𝗲 𝗛𝗲𝗮𝗿𝘁 𝗼𝗳 𝗖𝗮𝗿𝗲,” highlights how essential family support is to daily management and long-term outcomes. Effective care combines medical follow-up (neurology, cardiology, pulmonology), physiotherapy, nutrition, and mental-health support with practical assistance from caregivers and peer networks. When families are informed, connected, and supported, they can better coordinate care, prevent complications, and advocate for resources and inclusive policies.

You can help today: share this post, wear red or join #Challenge79, and encourage anyone noticing delayed motor milestones to ask their clinician for CK screening and genetic testing. Support local patient groups, donate to research, or volunteer time to connect families with services.

#WorldDuchenneDay #WorldDuchenneAwarenessDay #Duchenne #DMD #Becker #Challenge79 #EarlyDiagnosis #GeneticTesting #FamilyCare #RareDisease #SupportFamilies #SCABPharmacyPasted

When in Netherlands...
Tomorrow 7 September on World #Duchenne Awareness Day my #documentary 'Samen Sterk' will premier.

https://duchenne.nl

In the edit at full speed for a new short #documentary to premiere this Sunday 7 September on World #Duchenne Awareness Day.
Watch it via the media platforms of Duchenne Parent Project Nederland: duchenne.nl
#duchenneparentproject #duchenneday #worldduchenneday
Our last #documentary filming day was with Lewis (9). He is a true nature and animals lover and allowed me to following him with my camera for a while.
He was helping his grandparents baking waffles to collect money for #Duchenne research.
The story of Lewis and of Bart, Tom, Leo who I filmed earlier, next Sunday on World Duchenne Awareness Day.
https://www.worldduchenneday.org
Thank you Lewis and family for today’s filming. Sunday 7 September on World Duchenne Awareness Day my #documentary about people with #Duchenne muscular disease and their supporting communities will premier.
https://www.worldduchenneday.org
Ready for my last day of shooting a #documentary about people with #Duchenne muscle disease and their family, friends, neighbours and other volunteers to support them 24/7.
7 September World Duchenne Awareness Day https://www.worldduchenneday.org
Nicki Lygo is doing a bit to raise money for Duchenne muscular dystrophy. Via Bluesky.
#Duchenne #GiveABit
https://bsky.app/profile/drlygo.bsky.social/post/3lx7z6eikqk2n
Nicki Lygo (@drlygo.bsky.social)

Oops… I got carried away #EndDuchenne https://www.justgiving.com/page/nicki-lygo-50k

Bluesky Social