August is Spinal Muscular Atrophy Awareness Month. 🦋
We honor SMA warriors, caregivers, & advocates—and work toward more awareness, research, and hope. 💜
#SMAAwareness #DisabilityAwareness #RareDisease
We honor SMA warriors, caregivers, & advocates—and work toward more awareness, research, and hope. 💜
#SMAAwareness #DisabilityAwareness #RareDisease
August 30, 2025 at 4:56 PM
August is Spinal Muscular Atrophy Awareness Month. 🦋
We honor SMA warriors, caregivers, & advocates—and work toward more awareness, research, and hope. 💜
#SMAAwareness #DisabilityAwareness #RareDisease
We honor SMA warriors, caregivers, & advocates—and work toward more awareness, research, and hope. 💜
#SMAAwareness #DisabilityAwareness #RareDisease
The CSHL Fellows program began with CSHL Professor Adrian Krainer, a shining example of the importance of investing in early career scientists. His research was used for the development of Spinraza, the first approved drug for spinal muscular atrophy (SMA).
#SMAAwareness #ScienceMakesLifeBetter
#SMAAwareness #ScienceMakesLifeBetter
May 29, 2026 at 2:47 PM
The CSHL Fellows program began with CSHL Professor Adrian Krainer, a shining example of the importance of investing in early career scientists. His research was used for the development of Spinraza, the first approved drug for spinal muscular atrophy (SMA).
#SMAAwareness #ScienceMakesLifeBetter
#SMAAwareness #ScienceMakesLifeBetter
🏆 Scotland has become the first country in the UK to roll out newborn screening for Spinal Muscular Atrophy (SMA) — a major step forward in early diagnosis and treatment.
#CIL #cilmkt #ukisotope #NewbornScreening #SMA #SMAUK #SpinalMuscularAtrophy #SMAAwareness #HealthcareInnovation #Diagnostics
#CIL #cilmkt #ukisotope #NewbornScreening #SMA #SMAUK #SpinalMuscularAtrophy #SMAAwareness #HealthcareInnovation #Diagnostics
March 26, 2026 at 11:59 AM
🏆 Scotland has become the first country in the UK to roll out newborn screening for Spinal Muscular Atrophy (SMA) — a major step forward in early diagnosis and treatment.
#CIL #cilmkt #ukisotope #NewbornScreening #SMA #SMAUK #SpinalMuscularAtrophy #SMAAwareness #HealthcareInnovation #Diagnostics
#CIL #cilmkt #ukisotope #NewbornScreening #SMA #SMAUK #SpinalMuscularAtrophy #SMAAwareness #HealthcareInnovation #Diagnostics
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Simona, the patient expert, and Simon, the researcher: "Are microvascular defects relevant in Spinal Muscular Atrophy?: Characterisation of the mouse model." youtube.com/shorts/R85PI... #SMAAwareness #ConnectingTheDots
SMA Awareness Month 2025 | Connecting the Dots | Simon & Simona Part 1
YouTube video by SMA Europe
youtube.com
August 8, 2025 at 2:39 PM
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Simona, the patient expert, and Simon, the researcher: "Are microvascular defects relevant in Spinal Muscular Atrophy?: Characterisation of the mouse model." youtube.com/shorts/R85PI... #SMAAwareness #ConnectingTheDots
As 2025 comes to a close, we thank our SMA community for a year of progress, unity, and resilience. Thank you for your dedication and support. ✨ Wishing everyone a brighter, stronger, and more hopeful 2026. Together, #WeAreOne
#OneGoal #SMA #SMAAwareness #HappyHolidays #HappyNewYear #2026
#OneGoal #SMA #SMAAwareness #HappyHolidays #HappyNewYear #2026
December 17, 2025 at 10:02 AM
As 2025 comes to a close, we thank our SMA community for a year of progress, unity, and resilience. Thank you for your dedication and support. ✨ Wishing everyone a brighter, stronger, and more hopeful 2026. Together, #WeAreOne
#OneGoal #SMA #SMAAwareness #HappyHolidays #HappyNewYear #2026
#OneGoal #SMA #SMAAwareness #HappyHolidays #HappyNewYear #2026
🔬This Spinal Muscular Atrophy Awareness Month, from SMA Europe, we are Connecting the Dots! Research in SMA is vital.
Did you ever wonder how research can have a real impact on the lives of people who live with SMA? Only together, WeAreOne
#SMAAwareness #ConnectingTheDots #SpinalMuscularAtrophy
Did you ever wonder how research can have a real impact on the lives of people who live with SMA? Only together, WeAreOne
#SMAAwareness #ConnectingTheDots #SpinalMuscularAtrophy
August 1, 2025 at 9:05 AM
🔬This Spinal Muscular Atrophy Awareness Month, from SMA Europe, we are Connecting the Dots! Research in SMA is vital.
Did you ever wonder how research can have a real impact on the lives of people who live with SMA? Only together, WeAreOne
#SMAAwareness #ConnectingTheDots #SpinalMuscularAtrophy
Did you ever wonder how research can have a real impact on the lives of people who live with SMA? Only together, WeAreOne
#SMAAwareness #ConnectingTheDots #SpinalMuscularAtrophy
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Simona, the patient expert, and Simon, the researcher: "Are microvascular defects relevant in Spinal Muscular Atrophy?: Characterisation of the mouse model." youtu.be/o1R5h3j1lLE #SMAAwareness #ConnectingTheDots
SMA Awareness Month 2025 | Connecting the Dots | Simon & Simona Part 2
YouTube video by SMA Europe
youtu.be
August 12, 2025 at 10:46 AM
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Simona, the patient expert, and Simon, the researcher: "Are microvascular defects relevant in Spinal Muscular Atrophy?: Characterisation of the mouse model." youtu.be/o1R5h3j1lLE #SMAAwareness #ConnectingTheDots
Thank you all who watched and engaged in our campaign! If you want to keep in touch, you can subscribe to our monthly newsletter here: https://www.sma-europe.eu/ And if you want to support the research projects we fund, you can click here: https://www.sma-europe.eu/donate #WeAreOne #SMAAwareness
August 31, 2025 at 9:02 AM
Thank you all who watched and engaged in our campaign! If you want to keep in touch, you can subscribe to our monthly newsletter here: https://www.sma-europe.eu/ And if you want to support the research projects we fund, you can click here: https://www.sma-europe.eu/donate #WeAreOne #SMAAwareness
Forbes sat down with CSHL's Adrian Krainer to discuss his 40-year career, his contributions to life-saving science, and the future. https://www.cshl.edu/videos/forbes-how-adrian-krainer-changed-modern-medicine/
#SMAAwareness #ScienceMakesLifeBetter
#SMAAwareness #ScienceMakesLifeBetter
August 7, 2026 at 1:17 PM
Forbes sat down with CSHL's Adrian Krainer to discuss his 40-year career, his contributions to life-saving science, and the future. https://www.cshl.edu/videos/forbes-how-adrian-krainer-changed-modern-medicine/
#SMAAwareness #ScienceMakesLifeBetter
#SMAAwareness #ScienceMakesLifeBetter
This month is for Spinal Muscular Atrophy Awareness. It's time to increase understanding, support research, and stand with those living with SMA.
We are committed to individualized care for residents with complex needs, ensuring quality of life.
#SMAAwareness #InclusiveCare #BrooklynCares
We are committed to individualized care for residents with complex needs, ensuring quality of life.
#SMAAwareness #InclusiveCare #BrooklynCares
August 12, 2025 at 3:36 PM
This month is for Spinal Muscular Atrophy Awareness. It's time to increase understanding, support research, and stand with those living with SMA.
We are committed to individualized care for residents with complex needs, ensuring quality of life.
#SMAAwareness #InclusiveCare #BrooklynCares
We are committed to individualized care for residents with complex needs, ensuring quality of life.
#SMAAwareness #InclusiveCare #BrooklynCares
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Christiana, the patient expert, and Morgan, the researcher: "Deciphering the Molecular Landscape of Neuromuscular Development in Spinal Muscular Atrophy." 🔗 https://www.sma-europe.eu/donate #WeAreOne #SMAAwareness #ConnectingTheDots
August 4, 2025 at 10:32 AM
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Christiana, the patient expert, and Morgan, the researcher: "Deciphering the Molecular Landscape of Neuromuscular Development in Spinal Muscular Atrophy." 🔗 https://www.sma-europe.eu/donate #WeAreOne #SMAAwareness #ConnectingTheDots
August is Spinal Muscular Atrophy (SMA) Awareness Month!
Join us for in-person and virtual events.
Learn, connect, and access free resources and services for people with disabilities.
Register: rollingstart.com/calendar
#SMAAwareness #IndependentLiving
Join us for in-person and virtual events.
Learn, connect, and access free resources and services for people with disabilities.
Register: rollingstart.com/calendar
#SMAAwareness #IndependentLiving
![[ID: An image of the Rolling Start Inc. August 2026 calendar. This month's theme is Spinal Muscular Atrophy Awareness Month. Promoting education, advocacy, research, and support for those affected by Spinal Muscular Atrophy (SMA). This month celebrates the strength and resilience of the SMA community while encouraging greater understanding and inclusion. Go to www.rollingstart.com/calendar to go to the accessible version of our calendar on our website.]](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:jsbyrj7yt7fzvmezi233jfcn/bafkreig3didpp2bgrzjljhnglfahm6uouagtjg75fvpyes7uzcdftj5qdu)
August 5, 2026 at 6:41 PM
August is Spinal Muscular Atrophy (SMA) Awareness Month!
Join us for in-person and virtual events.
Learn, connect, and access free resources and services for people with disabilities.
Register: rollingstart.com/calendar
#SMAAwareness #IndependentLiving
Join us for in-person and virtual events.
Learn, connect, and access free resources and services for people with disabilities.
Register: rollingstart.com/calendar
#SMAAwareness #IndependentLiving
SMA Awareness Month = celebrating strength & pushing for progress 💜
Read how families + advocates are raising awareness & supporting research via @cbsaustin 📰
👉 cbsaustin.com/features/we-...
#SMAAwareness #DisabilityCommunity
Read how families + advocates are raising awareness & supporting research via @cbsaustin 📰
👉 cbsaustin.com/features/we-...
#SMAAwareness #DisabilityCommunity
Spinal Muscular Atrophy Awareness Month highlights community efforts to find a cure
AUSTIN, Texas — August marks Spinal Muscular Atrophy (SMA) Awareness Month, a time dedicated to raising awareness about this progressive neurodegenerative disea
cbsaustin.com
August 30, 2025 at 5:03 PM
SMA Awareness Month = celebrating strength & pushing for progress 💜
Read how families + advocates are raising awareness & supporting research via @cbsaustin 📰
👉 cbsaustin.com/features/we-...
#SMAAwareness #DisabilityCommunity
Read how families + advocates are raising awareness & supporting research via @cbsaustin 📰
👉 cbsaustin.com/features/we-...
#SMAAwareness #DisabilityCommunity
August is #SpinalMuscularAtrophyAwarenessMonth—a time to recognize the challenges faced by those living with #SMA and their families 💜
If you or someone you love is living with SMA, we're here to help through our SMA #TotalAssist funds: https://bit.ly/4hp1P7U
#RareDisease #SMAAwareness
If you or someone you love is living with SMA, we're here to help through our SMA #TotalAssist funds: https://bit.ly/4hp1P7U
#RareDisease #SMAAwareness
August 13, 2026 at 11:55 PM
August is #SpinalMuscularAtrophyAwarenessMonth—a time to recognize the challenges faced by those living with #SMA and their families 💜
If you or someone you love is living with SMA, we're here to help through our SMA #TotalAssist funds: https://bit.ly/4hp1P7U
#RareDisease #SMAAwareness
If you or someone you love is living with SMA, we're here to help through our SMA #TotalAssist funds: https://bit.ly/4hp1P7U
#RareDisease #SMAAwareness
Thank you for joining our anniversary webinar! We’re grateful to all who celebrated 5 years of the SMA Newborn Screening Alliance with us, and to our incredible speakers for their insights and inspiration. Together, #weareone
#nbsa #smaawareness
#nbsa #smaawareness
December 12, 2025 at 10:30 AM
Thank you for joining our anniversary webinar! We’re grateful to all who celebrated 5 years of the SMA Newborn Screening Alliance with us, and to our incredible speakers for their insights and inspiration. Together, #weareone
#nbsa #smaawareness
#nbsa #smaawareness
📣On #INSD2025, we mark SMA screening progress in Europe, from 0% to 65%. But no baby should be left behind.
Clara was diagnosed late. Many still are.
🔗 https://www.sma-screening-alliance.org/ | https://odysma.sma-europe.eu/
#SMA #newbornscreening #OdySMA #SMAawareness #raredisease #advocacy
Clara was diagnosed late. Many still are.
🔗 https://www.sma-screening-alliance.org/ | https://odysma.sma-europe.eu/
#SMA #newbornscreening #OdySMA #SMAawareness #raredisease #advocacy
June 28, 2025 at 12:01 PM
📣On #INSD2025, we mark SMA screening progress in Europe, from 0% to 65%. But no baby should be left behind.
Clara was diagnosed late. Many still are.
🔗 https://www.sma-screening-alliance.org/ | https://odysma.sma-europe.eu/
#SMA #newbornscreening #OdySMA #SMAawareness #raredisease #advocacy
Clara was diagnosed late. Many still are.
🔗 https://www.sma-screening-alliance.org/ | https://odysma.sma-europe.eu/
#SMA #newbornscreening #OdySMA #SMAawareness #raredisease #advocacy
Jesy Nelson Reemerges Amidst Family Health Ordeal, Declares "Back"
Singer Jesy Nelson, 34, is back after focusing on her twins' SMA Type 1 diagnosis. She advocates for early newborn testing.
#JesyNelson, #SMAawareness, #New...
https://newsletter.tf/jesy-nelson-twins-sma-diagnosis-advocacy-return/
Singer Jesy Nelson, 34, is back after focusing on her twins' SMA Type 1 diagnosis. She advocates for early newborn testing.
#JesyNelson, #SMAawareness, #New...
https://newsletter.tf/jesy-nelson-twins-sma-diagnosis-advocacy-return/
April 10, 2026 at 8:07 PM
Jesy Nelson Reemerges Amidst Family Health Ordeal, Declares "Back"
Singer Jesy Nelson, 34, is back after focusing on her twins' SMA Type 1 diagnosis. She advocates for early newborn testing.
#JesyNelson, #SMAawareness, #New...
https://newsletter.tf/jesy-nelson-twins-sma-diagnosis-advocacy-return/
Singer Jesy Nelson, 34, is back after focusing on her twins' SMA Type 1 diagnosis. She advocates for early newborn testing.
#JesyNelson, #SMAawareness, #New...
https://newsletter.tf/jesy-nelson-twins-sma-diagnosis-advocacy-return/
A baby has become the first person to be successfully treated for a rare genetic disease before birth.
#GeneticMedicine #SpinalMuscularAtrophy #PrenatalCare #MedicalBreakthrough #SMAAwareness #RareDiseases #GeneTherapy #FDAApproval
#GeneticMedicine #SpinalMuscularAtrophy #PrenatalCare #MedicalBreakthrough #SMAAwareness #RareDiseases #GeneTherapy #FDAApproval
April 23, 2025 at 10:47 AM
A baby has become the first person to be successfully treated for a rare genetic disease before birth.
#GeneticMedicine #SpinalMuscularAtrophy #PrenatalCare #MedicalBreakthrough #SMAAwareness #RareDiseases #GeneTherapy #FDAApproval
#GeneticMedicine #SpinalMuscularAtrophy #PrenatalCare #MedicalBreakthrough #SMAAwareness #RareDiseases #GeneTherapy #FDAApproval
@novartis.bsky.social #genetherapy #spinalmuscularatrophy #SMAtreatment #OAV101IT #onasemnogeneabeparvovec #typeIISMApatients #intrathecalformaulation #STEERstudy #genetransfertherapy #typeIIspinalmuscularatrophy #SMAawareness #Zolgensma #IVformulation #Neurology
pharmatimes.com/news/novarti...
pharmatimes.com/news/novarti...
Novartis gene therapy set to enhance SMA treatment - PharmaTimes
OAV101 IT expands potential for type II SMA patients
pharmatimes.com
January 8, 2025 at 10:12 AM
A birthday fundraiser gave Anush access to treatment for SMA.
And still has to fundraise to survive.
🔗 Read more of her story via the QR code in the photo.
#SMA #RareDisease #AccessToTreatment #OdySMA #SMAAwareness
And still has to fundraise to survive.
🔗 Read more of her story via the QR code in the photo.
#SMA #RareDisease #AccessToTreatment #OdySMA #SMAAwareness
May 4, 2026 at 10:31 AM
A birthday fundraiser gave Anush access to treatment for SMA.
And still has to fundraise to survive.
🔗 Read more of her story via the QR code in the photo.
#SMA #RareDisease #AccessToTreatment #OdySMA #SMAAwareness
And still has to fundraise to survive.
🔗 Read more of her story via the QR code in the photo.
#SMA #RareDisease #AccessToTreatment #OdySMA #SMAAwareness
Budapest reunion! 🥳🤩At the Global SMAdvocacy Event, 70 patient advocates from over 40 countries around the world joined forces and strategised towards a better world for people living with SMA.
Thank you ALL who joined! 💜
All together. One goal.
#WeAreOne #smacongress2026 #smaawareness
Thank you ALL who joined! 💜
All together. One goal.
#WeAreOne #smacongress2026 #smaawareness
March 27, 2026 at 10:03 AM
Budapest reunion! 🥳🤩At the Global SMAdvocacy Event, 70 patient advocates from over 40 countries around the world joined forces and strategised towards a better world for people living with SMA.
Thank you ALL who joined! 💜
All together. One goal.
#WeAreOne #smacongress2026 #smaawareness
Thank you ALL who joined! 💜
All together. One goal.
#WeAreOne #smacongress2026 #smaawareness
📢 The SMA Newborn Screening Alliance is excited to share that the updated White Paper on Newborn Screening for SMA is now available in Spanish. You can access it here: https://www.sma-screening-alliance.org/resources
We extend our sincere thanks to @FUNDAME.
#SMAAwareness #NewbornScreening #SMA
We extend our sincere thanks to @FUNDAME.
#SMAAwareness #NewbornScreening #SMA
March 4, 2026 at 2:02 PM
📢 The SMA Newborn Screening Alliance is excited to share that the updated White Paper on Newborn Screening for SMA is now available in Spanish. You can access it here: https://www.sma-screening-alliance.org/resources
We extend our sincere thanks to @FUNDAME.
#SMAAwareness #NewbornScreening #SMA
We extend our sincere thanks to @FUNDAME.
#SMAAwareness #NewbornScreening #SMA
📣 Celebrating 5 years of the SMA Newborn Screening Alliance!
Early identification in SMA can mean the difference between muscle loss and a stronger start to life. Every child deserves timely diagnosis and treatment.
Learn more: https://www.sma-screening-alliance.org
#NBSA #SMAAwareness #WeAreOne
Early identification in SMA can mean the difference between muscle loss and a stronger start to life. Every child deserves timely diagnosis and treatment.
Learn more: https://www.sma-screening-alliance.org
#NBSA #SMAAwareness #WeAreOne
December 9, 2025 at 12:32 PM
📣 Celebrating 5 years of the SMA Newborn Screening Alliance!
Early identification in SMA can mean the difference between muscle loss and a stronger start to life. Every child deserves timely diagnosis and treatment.
Learn more: https://www.sma-screening-alliance.org
#NBSA #SMAAwareness #WeAreOne
Early identification in SMA can mean the difference between muscle loss and a stronger start to life. Every child deserves timely diagnosis and treatment.
Learn more: https://www.sma-screening-alliance.org
#NBSA #SMAAwareness #WeAreOne
We are very excited to share the article about our 2025 Awareness Campaign, "Connecting the Dots" written by Jacob Harney for SMA News Today. https://smanewstoday.com/news/sma-awareness-campaign-aims-connect-research-patient-needs/ Together #weareone #spinalmuscularatrophy #smaawareness #smaresearch
September 10, 2025 at 9:02 AM
We are very excited to share the article about our 2025 Awareness Campaign, "Connecting the Dots" written by Jacob Harney for SMA News Today. https://smanewstoday.com/news/sma-awareness-campaign-aims-connect-research-patient-needs/ Together #weareone #spinalmuscularatrophy #smaawareness #smaresearch
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Jakub, the patient expert, and Sorana, the researcher: "Investigating Calcium-induced mitochondrial dysfunction in zebrafish and iPSC models of SMA." https://www.sma-europe.eu/donate #WeAreOne #SMAAwareness #ConnectingTheDots
August 28, 2025 at 9:03 AM
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Jakub, the patient expert, and Sorana, the researcher: "Investigating Calcium-induced mitochondrial dysfunction in zebrafish and iPSC models of SMA." https://www.sma-europe.eu/donate #WeAreOne #SMAAwareness #ConnectingTheDots