Nejdůležitější je mít dobře krytá záda 😊

(a vědět, že chytí … Vyzkoušeno a chytil 😁)

#MakatSeMusí #NicNeníZadarmo #CortexNeuroCenter #spinalmuscularatrophy #Atrofka

“Kousek” po “kousku” a jednou to půjde 🥹

#NevzdávejSe #NeverGiveUp #rememberwhoyouare #rememberwhereyoucamefrom #DržSe #ANepřestávejVěřit #ZázrakyNepřicházíJenTak #smastory #storyofmylife #spinalmuscularatrophy #slabostnenislabina #Atrofka

Mám za sebou první letošní intenzivní rehabilitace 💪
Děkuju Cortex Neuro Centre a všem terapeutům za protahování, dřinu, ale taky trpělivost a srandy.
Těším se na příště 🙏

#MakatSeMusí #NicNeníZadarmo #CortexNeuroCenter #neurorehabilitace #spinalmuscularatrophy #Atrofka

The Passy Muir Valve helps with voice and speech production and improves swallowing. How has it helped you?

#SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

#spinalmuscularatrophy #Huntington #neurodevelopmentaldefects #neurodegeneration
Neurodevelopmental defects as a primer of neurodegeneration: lessons from spinal muscular atrophy and Huntington’s disease
journals.lww.com/nrronline/full…
University of Oxford

For Mike Blakey, “maximizing what your body allows” is a big part of living well with SMA. How do you define wellness in your life? bit.ly/3UftiMc

#SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

🎧 The journey with #SpinalMuscularAtrophy (SMA) is unique for everyone, and the SMA My Way podcast is here to recognise and celebrate that.

Join us to listen to the powerful stories of our SMA My Way Champions: spkl.io/60124N6Mr

Newborn twins fight rare genetic disease, family says itll costs millions of dollars to save their lives #SpinalMuscularAtrophy #GeneticResearch #Healthcare #MedicalScience #RareDiseases [Video] New parents are fighting to save the lives of their newborn… dlvr.it/T6BtkJ

Findings out of China suggest “plausible biological explanations” for some of the associations. Read about them here: bit.ly/3Uh0hjd

#SpinalMuscularAtrophy #SMAResearch #SMANews Today #SMANews

If SMA begins to affect muscles involved in breathing, a pulmonologist or respiratory therapist can help. Explore how: bit.ly/3wkM1Op

#SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

Do you keep track of new symptoms you're having or progression you're experiencing? Doing so might be a good idea. Here's why: bit.ly/44eAo8w

#SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

New article posted on Rare Disease Advisor #SMA : 'Early Treatment Can Prevent Development of SMA Symptoms.' Read the full article here: buff.ly/3wdRF4Q #spinalmuscularatrophy #neurology #raredisease

In our feature ‘SMAdvocacy The Journey Towards Advocacy & Hope’ Nicole shares her story with us. You can read more here:

samebutdifferentcic.org.uk/raritylife

#RarityLife #raredisease #SMA #SpinalMuscularAtrophy #research #inclusionmatters #nationallottery

SMA-Europe

Escaping uncomfortable caregiving discussions is unrealistic, writes Katie Napiwocki, but modifying our responses is doable. Here are her tips: bit.ly/49RnzCb

#SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

Listen to one mother explain what she looks for in physicians or other providers caring for her son, who lives with SMA. bit.ly/4b8NQg6

#SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

Hugo, who lives with SMA type 3, discusses the part he plays in coordinating his care team: bit.ly/4daWVH3

#SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

Newborn twins fight rare genetic disease, family says itll costs millions of dollars to save their lives #SpinalMuscularAtrophy #SMAAwareness #SMAAwareness Month #SMAAwareness Week #SMACommunity [Video] New parents are fighting to save the lives of their… dlvr.it/T6Btx9

Halsey Blocher is no stranger to traveling — and accessible vacation home rentals make doing so with SMA easier than ever. bit.ly/3W3JUZO

#SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

Catch up on the #SMANewsToday Column of the Week here: bit.ly/3Qfczre

#SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

If your doctor-patient relationship is facing communication challenges, these steps may help get you back on track: bit.ly/3xYOfmY

#SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA