<div>Hello, my name is Fernando, and I'm reaching out as a father doing everything possible to save his son.
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<div>We recently received a devastating news. My son Marco, just 7 years old, has been diagnosed with an ultra-rare and progressive genetic disorder called <strong>Beta-mannosidosis</strong>. The road to a rare disease diagnosis is often long and grueling. For families like ours, it’s also a race against time. There’s <strong>currently no cure or treatment</strong> for Beta-mannosidosis. There are only <strong>five known cases</strong> in the entire U.S. One of them is our Marco.
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<div>But there’s a glimmer of hope. A groundbreaking collaboration has begun between the <strong>University of California Irvine (UCI)</strong> and a pharmaceutical company. They’ve agreed to develop a treatment, at no profit. But we, the families, must raise the funds needed to support the preclinical research that we urgently need. Our goal is to raise <strong>$521,000 by August 2025</strong> to make this life-saving project possible. This GoFundMe represents the portion still needed to reach that goal.
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<div>To lead this effort, the affected families came together to create a nonprofit foundation: <strong>The Lost Enzyme Project</strong> (<a href="https://thelostenzymeproject.org/" target="_blank" rel="noreferrer noopener"><a href="https://thelostenzymeproject.org/" target="_blank" class="" rel="nofollow noopener noreferrer">https://thelostenzymeproject.org/</a></a>).
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<div><strong>Why this matters</strong>
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<div>This fight is not just for Marco; it’s a fight for the future of every child with Beta-mannosidosis and those still undiagnosed. This condition is believed to be significantly underdiagnosed, and early diagnosis and treatment can save lives. Our hope is to one day see Beta-Mannosidosis included in routine newborn screenings. Beyond that, this research could lead to breakthroughs in treating other rare diseases, thanks to the development of a delivery method that crosses the blood-brain barrier—a major hurdle in treating neurological conditions.
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<div><strong>We need your help</strong>
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<div>Our fundraising journey has been difficult. Our children are often overlooked by organizations focused on what they perceive as “bigger” impact. But to us, the lives of our children are the biggest impact. We are asking for your support. Every donation brings us closer to treatment. Every share spreads awareness. Every act of kindness gives us hope.
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<div>From the bottom of our hearts, thank you. Your support means the world to us. Together, we can bring hope - and help give these children the futures they deserve.
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<div>With love and gratitude,
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<div>Fernando
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<div>Hola, mi nombre es Fernando y me comunico con ustedes como un padre que está haciendo todo lo posible para salvar a su hijo.
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<div>Recientemente recibimos una noticia devastadora. Mi hijo Marco, de solo 7 años, ha sido diagnosticado con un trastorno genético ultra-raro y progresivo llamado <strong>Beta-manosidosis</strong>. El camino del diagnóstico de una enfermedad rara suele ser largo y agotador. Para familias como la nuestra, también es una carrera contra el tiempo. Actualmente <strong>no existe cura ni tratamiento</strong> para la Beta-manosidosis. Solo hay <strong>cinco casos</strong> conocidos en todo Estados Unidos. Uno de ellos es nuestro Marco.
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<div>Pero hay un rayo de esperanza. Se ha comenzado una colaboración innovadora entre la <strong>Universidad de California en Irvine (UCI)</strong> y una empresa farmacéutica. Ellos han accedido a desarrollar un tratamiento, sin fines de lucro. Pero nosotros, las familias, debemos recaudar los fondos necesarios para apoyar la investigación preclínica que necesitamos con urgencia. Nuestra meta es <strong>recaudar $521,000 para agosto de 2025</strong> y así hacer posible este proyecto que puede salvar vidas. Esta campaña de GoFundMe representa la parte que aún falta para alcanzar ese objetivo.
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<div>Para liderar este esfuerzo, las familias afectadas nos unimos y creamos una fundación sin fines de lucro: <strong>The Lost Enzyme Project</strong> (<a href="https://thelostenzymeproject.org/" target="_blank" rel="noreferrer noopener"><a href="https://thelostenzymeproject.org/" target="_blank" class="" rel="nofollow noopener noreferrer">https://thelostenzymeproject.org/</a></a>).
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<div><strong>Por qué importa esto</strong>
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<div>Esta lucha no es solo por Marco; es una lucha por el futuro de cada niño con Beta-manosidosis y por aquellos que aún no han sido diagnosticados. Se cree que esta condición está significativamente subdiagnosticada, y un diagnóstico con tratamiento temprano puede salvar vidas. Nuestra esperanza es que algún día la Beta-manosidosis sea incluida en los exámenes rutinarios de recién nacidos. Más allá de eso, esta investigación podría generar avances en el tratamiento de otras enfermedades raras, gracias al desarrollo de un método de administración capaz de cruzar la barrera hematoencefálica, uno de los mayores obstáculos en el tratamiento de enfermedades neurológicas.
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<div><strong>Necesitamos tu ayuda</strong>
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<div>Nuestra campaña de recaudación ha sido difícil. Nuestros hijos a menudo son ignorados por organizaciones que se enfocan en lo que perciben como un “mayor” impacto. Pero para nosotros, la vida de nuestros hijos es el mayor impacto. Estamos pidiendo tu apoyo. Cada donación nos acerca al tratamiento. Cada vez que compartes, creas conciencia. Cada acto de bondad nos da esperanza.
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<div>Desde el fondo de nuestros corazones, gracias. Tu apoyo significa el mundo para nosotros. Juntos, podemos traer esperanza y ayudar a darles a estos niños el futuro que merecen.
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<div>Con cariño y gratitud,
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<div>Fernando
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<div>#betamannosidosis
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<div>#thesekidscantwait
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<div>#raredisease
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<div>#savingmarco
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<div>#juntospormarco
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<div>#juntosxmarco
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<div>#thelostenzymeproject
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<div>Juntos por Marco
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Robert Buessing

Brian Chiasson

sandra vejar

Meche Cabrera

Anonymous

Hatnan Olivarria

Yohana Puccia

Rodolfo Chacon Gutierrez

Alex Ortegón

Ma Calderon R

Carmen L Gonzalez Chavez

Rebeca Balderrama Dueñas

Eugenia Castaneda

Grant Lawson

Edith Fernanda Corona Valencia

Erendira Sarahi Hernandez Lara

Miriam Valencia

Danielle Stern

Teresa Espinosa Villarreal

Saving Marco -- Juntos Por Marco -- Ultra-Rare Disease

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

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fallback mode accounts

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p2p legacy startfundraising page

AMP24 New Funds Only PROD (DO NOT MODIFY)

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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

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email

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npoProfileOptIn

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categoryGroup

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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

Saving Marco -- Juntos Por Marco -- Ultra-Rare Disease

Ainda faltam $293,172. Ajude-nos a dar um impulso.