<div>-scroll down for English version-
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<div><em>Update:</em>
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<div><em>Liebe Unterstützerinnen und Unterstützer,</em>
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<div><em>aus tiefstem Herzen danken wir euch für eure überwältigende Solidarität, eure Anteilnahme und eure warmen Worte. Jeder einzelne Beitrag gibt uns Mut und Hoffnung auf dem Weg zur Gentherapie für  Louisa. Dank euch haben wir unser erstes Spendenziel erreicht – und dafür sind wir euch unendlich dankbar! ❤️</em>
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<div>Am 18. August dieses Jahres veränderte sich unser Leben für immer als wir die Diagnose erhielten, dass unsere 3-jährige Tochter Louisa an einer seltenen genetischen Krankheit leidet: <strong>Mucopolysaccharidose Typ IIIA (MPS IIIA)</strong>, auch besser bekannt als <strong>Sanfilippo-Syndrom</strong>.
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<div>Diese Krankheit ist eine schnell <strong>fortschreitende neurodegenerative Stoffwechselerkrankung</strong>, die dazu führt, dass der Körper bestimmte Stoffe nicht abbauen kann. Sie lagern sich im Gehirn und im gesamten Körper ab. Kinder, die zunächst völlig gesund erscheinen, verlieren nach und nach das bislang Erlernte - Sprache, Beweglichkeit und kognitive Fähigkeiten. Schließlich führt die Krankheit zum Tod im frühen Jugendalter.
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<div>Eine vielversprechende Gentherapie <a href="https://www.ultragenyx.com/our-research/pipeline/ux111-for-mps-iiia/" target="_blank" rel="noreferrer noopener">UX 111</a> von der US-amerikanischen Firma Ultragenyx soll im Laufe des Jahres 2026 in den USA auf den Markt kommen. Für Louisa ist ein schneller Zugang zu dieser Therapie entscheidend, da die Krankheit sich schubweise entwickelt und bereits geschädigte Zellen nicht wiederhergestellt werden können.
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<div><strong>⏳ JEDER TAG ZÄHLT! Um die Kosten einer solchen Gentherapie in Millionenhöhe stemmen zu können, starten wir heute, am World Sanfilippo Day (16.11.2025), unsere Spendenaktion für Louisa.</strong>
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<div>Eure Unterstützung kann darüber mitentscheiden, wie viel Zeit Louisa bleibt und welche Zukunft sie haben kann. Sollte Louisa wider Erwarten unmittelbar nach einer möglichen US-Freigabe die Gentherapie in Europa erhalten können und die gesammelten Spenden nicht vollständig für ihre Behandlung benötigt werden, werden wir die restliche Spende verantwortungsvoll für Forschungsprojekte zum Sanfilippo-Syndrom und dessen Heilung einsetzen (z.B. an die <a href="https://curesanfilippofoundation.org/" target="_blank" rel="noreferrer noopener">Cure Sanfilippo Foundation</a> ). Damit können wir anderen betroffenen Kindern Hoffnung schenken – so wie wir es uns für Louisa wünschen.
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<div>Jede Spende – ob klein oder groß – bringt uns diesem Ziel näher.
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<div>Bitte teilt Louisas Geschichte. Sprecht darüber. Teilt sie in euren Netzwerken.
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<div>Gemeinsam können wir Bewusstsein schaffen, Hoffnung schenken und Leben verändern.
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<div>Von Herzen danken wir euch für eure Unterstützung! ❤️
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<div>Louisa, Lennart &amp; Aurélie
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<div>---
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<div><em>Update:</em>
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<div><em>From the bottom of our hearts, we want to thank you for your overwhelming solidarity, your compassion, and your kind words. Every single contribution gives us courage and hope on our path toward gene therapy for Louisa. Thanks to you, we have reached our first fundraising goal - and we are endlessly grateful to you for this! ❤️</em>
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<div>On August 18 of this year, our lives changed forever. We received the devastating news that our 3-year-old daughter Louisa has a rare genetic disease: <strong>mucopolysaccharidosis type IIIA (MPS IIIA)</strong>, also known as <strong>Sanfilippo syndrome</strong>.
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<div>This rapidly progressing neurodegenerative disorder prevents the body from breaking down certain substances, causing them to accumulate in the brain and throughout the body. Children who initially seem perfectly healthy gradually lose the abilities they once mastered - speech, mobility, and cognitive skills. Ultimately, the disease is fatal, often leading to death in early adolescence.
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<div>A promising gene therapy, <a href="https://www.ultragenyx.com/our-research/pipeline/ux111-for-mps-iiia/" target="_blank" rel="noreferrer noopener">UX111</a> , developed by the American company Ultragenyx, is expected to launch in the United States in 2026. For Louisa, early access to this therapy is critical. Sanfilippo syndrome advances in phases, and once cells are damaged, the loss cannot be reversed.
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<div>⏳ <strong>EVERY DAY COUNTS. That is why we are launching a fundraising campaign today on World Sanfilippo Day, November 16th, 2025, to help cover the immense cost of this therapy, which amounts to several million dollars.</strong>
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<div>Your support can help determine how much time Louisa has and what kind of future she can still have. If, contrary to expectations, Louisa is able to receive gene therapy in Europe immediately after a potential U.S. approval - and if the donations raised are not needed in full for her treatment - we will use the remaining funds responsibly to support Sanfilippo research and the search for a cure (for example, through the <a href="https://curesanfilippofoundation.org/" target="_blank" rel="noreferrer noopener">Cure Sanfilippo Foundation</a> ). In this way, we can give hope to other affected children - just as we hope for Louisa.
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<div>Every donation - big or small - brings us closer to this goal.
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<div>Please share Louisa’s story. Talk about it. Spread it within your networks.
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<div>Together, we can raise awareness, offer hope, and change lives.
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<div>From the bottom of our hearts, thank you for your support! ❤️
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<div>Louisa, Lennart &amp; Aurélie
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Benjamin Voßhans

Anonymous

Maria Pencheva

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Melanie Hofmann

Immo Hellwig

Conrad Ruhe

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Ali Alagöz

Julia Schraufstetter

Matti Kolczyk

Maria Fürstenberg

Hoffnung für Louisa - Gemeinsam gegen das Sanfilippo-Syndrom

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Hoffnung für Louisa - Gemeinsam gegen das Sanfilippo-Syndrom

Still €456,310 to go. Help us build momentum.