<div>-scroll down for English version-
</div>
<div><br />
</div>
<div><em>Update:</em>
</div>
<div><em>Liebe Unterstützerinnen und Unterstützer,</em>
</div>
<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>
</div>
<div><br />
</div>
<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>.
</div>
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<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>
</div>
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<div>Jede Spende – ob klein oder groß – bringt uns diesem Ziel näher.
</div>
<div>Bitte teilt Louisas Geschichte. Sprecht darüber. Teilt sie in euren Netzwerken.
</div>
<div><br />
</div>
<div>Gemeinsam können wir Bewusstsein schaffen, Hoffnung schenken und Leben verändern.
</div>
<div><br />
</div>
<div>Von Herzen danken wir euch für eure Unterstützung! ❤️
</div>
<div><br />
</div>
<div>Louisa, Lennart &amp; Aurélie
</div>
<div><br />
</div>
<div>---
</div>
<div><br />
</div>
<div><em>Update:</em>
</div>
<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>
</div>
<div><br />
</div>
<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>.
</div>
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<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>
</div>
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<div>Every donation - big or small - brings us closer to this goal.
</div>
<div>Please share Louisa’s story. Talk about it. Spread it within your networks.
</div>
<div><br />
</div>
<div>Together, we can raise awareness, offer hope, and change lives.
</div>
<div><br />
</div>
<div>From the bottom of our hearts, thank you for your support! ❤️
</div>
<div><br />
</div>
<div>Louisa, Lennart &amp; Aurélie
</div>

Maria Pencheva

Anonymous

Katharina Buschmeyer

Jakob Thomas Fischer

Melanie Hofmann

Immo Hellwig

Conrad Ruhe

Sylvia Voit

Stephanie Uhr

Ali Alagöz

Julia Schraufstetter

Matti Kolczyk

Maria Fürstenberg

Christina Unger

Hoffnung für Louisa - Gemeinsam gegen das Sanfilippo-Syndrom

platform

Platform is iOS

Android

Adyen Google Pay Development Audience

$opt_dummy_attribute

English only

Deprecate Stripe Legacy

dyn_template_ids

Adyen V6 Bene Transfer & MyMoney Campaign Organizers - test01

Bene transfer V6 and AdyenV6MyMoney Campaign Organizers - production

OneTrust next-app audience

fundCountryCode

NextDoor Share Option Users

Fundraisers with Reactions feature capability

fundCurrencyCode

US + Non-charity COs Only

locale

fund country is US and user language is English

personId

comms-internal-person-ids

Enhanced Story Experience Users

Suggested Goal Experience Users

user language is English and fund country: US, AU, DK, FI, IE, NO, SE, CA, GB; 

Poster share - new funds eligible (newest 9/18)

Streaming widgets beta user

paymentProcessor

3DS payment method

user language is English and fundCountry: US, AU, DK, FI, IE, NO, SE, CA, GB; 

currencyCode

Money Box Donation List Prompt Experiment Audience

GoFundMe Employees

ipAddress

Mark Rieth IP Address

Version 9.2.0 and above

Fund is in English speaking country

desktop

Android v12.11.0 and above

Platform is Android

paymentMethodType

checkoutType

Payment method type group to be vaulted on success

admin pr kit prod

EUR Donation Upsell

Share Text generation Skip Fundraiser

(prod) new funds eligible for amp12 (UGC gallery)

fintrac_cad_idv_form_v2 audience

paymentProcessorAccountId

fallback mode accounts

proCampaignId

p2p legacy startfundraising page

AMP24 New Funds Only PROD (DO NOT MODIFY)

countryCode

charityId

UKCharities

Federated Search Internal Testing

route.pathname community

US Donation Upsell audience 

Auto Thanks Feature Audience

Supporter Comments Eligible Funds

International Only

fundId

braze fundraiser group 

Payment Identity Transfers ATO Risk Check (Targeted) - Production

Fundraiser Saved Payment Method Rate Limit Bypass (Production)

leaderboard-partner-id-audience-givepanel

Version 9.2.1 and above

AUD Donation Upsell audience

fundraiserCountryCode is US/EN

Active Fundraiser - Smart Default Cadence

DAF Internal

Vault on success card payment method

Platform is iOS v11.0.0 and above

Desktop users

Person ids

United States (US) users

allow yuno fundraisers for test

Mexico country code

Posters INTL

NPO Profile Opted-In

iOS at or above 12.4.0

non-US recurring donors

Canada Campaign Owner Group

Fundraiser Without Meta Link

Scheduler payment tester gorup

charityCommunityId

Charities allow to be claimed unclaimed (PRD)

Canada (CA) users

UC Tipping v20250115 International

pymk_production_xplr_fe_team

Android at or above 12.2.0

Profile photo entry point audience

smart goals (fundraiser/manage) on test01

Activity Tracking v1 Beta Testing

start gfm intl allowed locales

Platform is iOS v11.2.0 and above

NPO upsell education category

unclaimed charities

prod_ach_audience

AI Chatbot Audience

amp13 only new funds (prod) (anyword auto)

UC Flow Enabled (Prod)

Payment Identity Beneficiary Verification - Production

shared notification bell audience

Custom users

ach frontend audience

Android v11.0.0 and above

Users Receiving Payments Paused Notifications

smart goals test01

Manage Coach - US English Organizers Only + new funds only

Team EGG - IP Address list

NPO recommendations prod

Fundraiser Without Instagram Deep Link

Native 11.4.0 and above

UC Tipping v20250107

Users Receiving Braze KYC Validation Failed

Native 11.3.0 and above

ai_title_page

anyword

openai

control

manual_entry

userEmail

template_id

userId

fundUrl

isCharityCo

email

appVersion

shouldBucketIntoExperiment

partnerId

donationCadence

isActiveFundraiser

isPartner

isMobile

npoProfileOptIn

fundIsLinkedWithMeta

hasSessionDonation

categoryGroup

isCampaignOwner

fundHasInstagramDeepLink

Native 11.4.0 and higher

New funds eligible - Video Sharing (PROD)

GB Donation Upsell audience 

Auto Thanks V3 Rollout Audience

Thank you V3 testing whitelist

isRecurringFriendly

Is Recurring Friendly

Excluded funds - Video Sharing

NPO upsell animals category

NPO upsell disaster relief category

Logged In Users

CH Donation Upsell audience

Android v10.6.0 and above

NPO upsell essential needs category

NPO upsell medical category

userCurrencyCode

Localized Currency

NPO upsell cancer category

v11.5.0 and above

testAudience

pathname

Survicate

appVersion is at or above 12.8.0

Non-charity fund

isChallengeFundraiser

challenge-fundraisers

Payment Identity Launch Verification - Production

New funds eligible - Posters v2

CAD Donation Upsell Audience

Braze Email Tester

NPO Profile Opted-Out

iOS App Version

hasKnownDonors

PYMK has donors

iOS v12.3.0 and above

Hoffnung für Louisa - Gemeinsam gegen das Sanfilippo-Syndrom

Still €457,235 to go. Help us build momentum.