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<div>Jag heter Alexander Lundskog. Min moster Anna och min kusin Wilma lever med nemalinmyopati – en sällsynt muskelsjukdom som påverkar andning, sväljförmåga och rörlighet. För de flesta familjer innebär en diagnos att man står utan vägledning. Det finns inga godkända behandlingar och ingen tydlig väg framåt. Bara det dagliga arbetet med att hantera ett tillstånd som läkarvetenskapen ännu inte hunnit ikapp.
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<div>Anna och Wilma har berättat för mig att deras kroppar känns som om de sprungit ett maratonlopp när en vanlig dag lider mot sitt slut. Den 1 november är det min tur att få uppleva den känslan på New Yorks gator.
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<div>Jag har tidigare tävlat på 800 meter och arbetar nu som läkare. I båda dessa roller har jag lärt mig att framsteg skapas av människor som vägrar acceptera att nuläget är tillräckligt bra. Därför var det ett lätt beslut att tacka ja när chansen dök upp att gå med i Team AFBS och springa TCS NYC Marathon för välgörenhet.
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<div>A Foundation Building Strength är den enda organisation som helt och hållet ägnar sig åt att hitta effektiva behandlingar mot nemalinmyopati. De driver just nu ett forskningsprojekt värt 3,6 miljoner dollar med fokus på genterapi och förberedelser inför kliniska prövningar – verklig vetenskap som rör sig mot konkreta resultat.
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<div>Varje krona av din gåva går oavkortat till forskningen. När du skänker pengar betalar du alltså inte för administrativa kostnader eller startavgift för loppet. Du finansierar det experiment som kan innebära säkrare andning för ett barn, eller starkare ben för någon som tidigare bara fått höra att de måste anpassa sig.
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<div>Om detta ändamål betyder något för dig – eller om du bara vill stötta någon som springer drygt 42 kilometer för de människor de älskar – så skulle jag uppskatta ditt stöd.
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<div>My name is Alexander Lundskog. My aunt Anna and my cousin Wilma live with Nemaline Myopathy — a rare muscle disorder affecting breathing, swallowing, and mobility. For most families, a diagnosis still comes without a roadmap. No approved treatments. No clear path forward. Just the daily work of managing a condition that medicine hasn't caught up with yet.
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<div>Anna and Wilma have told me that by the end of a normal day, their bodies feel like they've run a marathon. On November 1st, it's my turn to find out what that feels like on the streets of NYC.
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<div>I spent years as a competitive 800m runner, and now I work as a doctor. In both roles, I've learned that progress comes from people who refuse to accept that the current situation is good enough. That's why, when the chance came to join Team AFBS — running TCS NYC Marathon for charity — it wasn't a hard decision.
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<div>A Foundation Building Strength is the only organization wholly dedicated to finding effective treatments for Nemaline Myopathy. They are currently managing a $3.6 million research commitment focused on gene therapy and preparing for clinical trials — real science, moving toward real outcomes.
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<div>100% of every donation goes directly to research. So when you give, you're not covering overhead. You're funding the experiment that might mean safer breathing for a child, or stronger legs for someone who has been told to simply adapt.
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<div>If this cause means something to you — or if you just want to back someone running 26.2 miles for the people they love — I'd be grateful for your support.
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Running for Hope: Strength for Nemaline Myopathy

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Running for Hope: Strength for Nemaline Myopathy

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