Tagg: SMA

Boy with SMA Type 2 is running, standing , sitting, lifting alone under Spinraza

This is a miracle 💓 Boy with SMA Type 2 is running, standing and sitting, lifting alone. This is only possible with early treatment from birth with Spinraza. This is the new face from spinal muscular atrophy (SMA) 💪 #AdgangTilSpinrazaForAlle #AccessToSpinraza

Typical brothers playing. But can you believe one of them has SMA? Gabriel Peters was given the first FDA approved SMA treatment, Spinraza, while it was still in clinical trial three years ago. And this, friends, is a miracle. He is a miracle. The Peters family know this firsthand as their older daughter has SMA Type 2. Typically, the severity (or the type) is similar between siblings. But, with a treatment from birth, doctors now say Gabriel genetically has SMA but is asymptomatic — no type at all. Running, standing, lifting and throwing toys… all things not usually possible with this disease. This is SMA. The new SMA. And it is astounding! NEVER GIVE UP. www.NeverGiveUp.org#mynevergiveup #thisissma #miraclesdohappen #withalotofwork

Gepostet von Gwendolyn Strong Foundation am Mittwoch, 23. Mai 2018

CYTOKINETICS AND CURE SMA RENEW & EXPAND PARTNERSHIP TO ADVANCE EDUCATION & AWARENESS OF SMA

ELK GROVE VILLAGE, Ill. and SOUTH SAN FRANCISCO, Calif., May 17, 2018 (GLOBE NEWSWIRE) — Cure SMA and Cytokinetics today announced an expanded partnership to increase education, awareness and fundraising for spinal muscular atrophy (SMA).  As a National Platinum Partner for 2018, Cytokinetics will lend support to several of Cure SMA’s initiatives at both the local and national level to advance understanding of, and research toward potential treatments for SMA, a genetic disease that robs people of physical strength and takes away their ability to walk, eat or breathe.

“We have enjoyed a longstanding relationship with Cure SMA and are pleased to expand our involvements, particularly at a time when more attention and research are focused on the SMA community,” said Robert I. Blum, President and Chief Executive Officer of Cytokinetics. “We remain committed to advancing therapies for adolescents and adults with types II, III and IV SMA, a population in need of new therapies to address impaired muscle function and weakness despite the promise of gene-directed therapies.”

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Drenge med spinal muskelatrofi (SMA) type II søger hjælper til deltids

Familien har fået bevilliget hjælp 20 timer om ugen, som skal fordeles som følger: mandag-fredag kl. 5.45-7.45, mandag og onsdag kl. 15.00-19.00 og fredag kl. 15.00-17.00. Du vil både komme til at hjælpe drengen op om morgenen og gøre ham klar til at komme i skole, samt tilbringe tid med ham om eftermiddagen og lave forskellige aktiviteter, som I planlægger sammen.

Da opgaven er ny hos Olivia Danmark, skal vi ansætte et nyt hold – ca. 3 hjælpere – der kan dække de 20 timer. Det betyder, at du vil blive ansat til ca. 6 timer pr. uge. Der ligger ikke noget fast vagtrul, så vagterne kan fordeles ud fra dine

Jobfunktionen indebærer at du:

Når du er på vagt, er det en del af din opgave at køre drengen til eller fra skole. Nogle eftermiddage kan du tage med drengen i zoologisk have, skoven, biografen eller en anden hyggelig aktivitet uden for hjemmet. Drengen skal også følges til legeaftaler med venner. Ansøgning og kontak

Hvem kan hjælpe Line med et job?

Drenge med muskelsvind SMA II søger pædagog KILDEN Børne- og Ungeunivers