<div>Last year, we learned that our 4 year old son Oren was dying, that there was no cure, no treatment, no fight to be won. <strong>But you can help him have a chance to live. </strong>*donations are tax deductible*
</div>
<div><br />
</div>
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/96663693_1763538167400388_r." width="100%" />
<div><br />
</div>
<div><br />
</div>
<div><strong>Our Story</strong>
</div>
<div>Oren is an outgoing and joyful 6 year old boy who loves playing with his younger brother and sister and his cousins. He is expressive, has a contagious smile and laugh, and loves others unconditionally. When he was born, he had several minor complications which required surgery to correct. But according to doctors, the surgeries went well and there was nothing to be worried about going forward.
</div>
<div><br />
</div>
<div>However, when Oren was 2 years old, we began to notice challenges: difficulty learning to talk, developmental delays, chronic bowel issues, and trouble sleeping. We immediately started him in speech therapy and enrolled him in a preschool program to support his development.
</div>
<div><br />
</div>
<div>Despite early intervention, constant specialist visits, and our efforts at home, <strong>something still wasn't right</strong>. Not only was Oren not improving, his condition was worsening.
</div>
<div><br />
</div>
<div>After two years of doctor visits, research, and questioning, we still had no answers, no clear path forward to help our son. Not until a family friend, who is a nurse, saw a video on TikTok with a child who had symptoms strikingly similar to Oren come across her feed. The child had <strong>Sanfilippo Syndrome. </strong>The more we learned, the more we knew this was what Oren was facing. We contacted our pediatrician asking for a referral to a geneticist so he could be tested for Sanfilippo Syndrome. We were quickly referred to the nearest children's hospital, where testing began. `
</div>
<div><br />
</div>
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/96663693_1763538401321498_r." width="100%" />
<div><br />
</div>
<div><br />
</div>
<div>On July 31st, 2024, we learned that our 4 year old son Oren tested positive for MPS IIIB -Sanfilippo Syndrome Type B- <strong>a terminal disease with no cure </strong>and no available treatment. Commonly referred to as "Childhood Alzheimer's," Sanfilippo will take everything from him. He will lose his ability to speak the few precious words he knows, <strong>Oren will lose his ability to chase after his siblings and cousins, he will eventually forget all those he loves most. And then he will die. </strong>
</div>
<div><br />
</div>
<div><strong>But now there is HOPE. </strong>
</div>
<div><br />
</div>
<div>Just over a year after his diagnosis, there is an actual treatment option available for children with Sanfilippo Type B. This is truly a medical breakthrough in the world of Sanfilippo/MPS III. <strong>We believe that you can help our Oren get his miracle. </strong>For months, we laid by Oren's bed, praying and crying out for his healing and for a cure, and we promised we would do whatever was in our power to fight for him, for a cure, for better quality of life. We didn't know if we had the faith it would take to believe for a miracle, but now there is a path that could lead to one. Our hope is that bringing awareness to this rare childhood disease could help Oren and other beautiful Sanfilippo children have the opportunity to share their lives with us a little longer.
</div>
<div><br />
</div>
<div>Whether you can give financially or not, you can play a role in changing history.
</div>
<div><br />
</div>
<div><strong>How You Can Help</strong>
</div>
<div><br />
</div>
<div><strong>1. Pray </strong>
</div>
<div>Pray for the children impacted by Sanfilippo B. We believe that God is opening doors and that he is not finished with this story yet. Hope is rising. We have seen God moving in every step of our journey with Oren.
</div>
<div><br />
</div>
<div><strong>2. Give </strong>
</div>
<div>A gift of any size makes a difference.
</div>
<div>Your gift doesn’t just help our family — it helps create access for many children battling this disease.
</div>
<div><br />
</div>
<div><em>Other ways to donate: </em>
</div>
<div>--Donate on the Cure Sanfilippo Website (transaction fees apply; donors may opt to cover them): <a href="https://give.curesanfilippofoundation.org/campaign/653569/donate" target="_blank" rel="noreferrer noopener"><a href="https://give.curesanfilippofoundation.org/campaign/653569/donate" target="_blank" class="" rel="nofollow noopener noreferrer">https://give.curesanfilippofoundation.org/campaign/653569/donate</a></a>
</div>
<div><br />
</div>
<div>--For gifts of $500 or more, checks may be made payable to:
</div>
<div>Cure Sanfilippo Foundation
</div>
<div>P.O. Box 6901
</div>
<div>Columbia, SC 29260
</div>
<div><br />
</div>
<div><strong>3. Share</strong>
</div>
<div>Awareness is key.
</div>
<div>Share our GoFundMe. Just click the "share" button. Tell your community. Text it to a friend.
</div>
<div>One share could be the one that changes everything.
</div>
<div><br />
</div>
<div><strong>Follow Us </strong>
</div>
<div>Facebook: Save Oren (<a href="https://www.facebook.com/share/1DMYPnKtHk/?mibextid=wwXlfr" target="_blank" rel="noreferrer noopener"><a href="https://www.facebook.com/share/1DMYPnKtHk/?mibextid=wwXlfr" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.facebook.com/share/1DMYPnKtHk/?mibextid=wwXlfr</a></a>)
</div>
<div>Cure Sanfilippo Website: <a href="https://curesff.org/oren" target="_blank" rel="noreferrer noopener"><a href="https://curesff.org/oren" target="_blank" class="" rel="nofollow noopener noreferrer">https://curesff.org/oren</a></a>
</div>
<div>Instagram: @saveoren
</div>

Karen Westhoff

Anonymous

Tammy Crabtree

Joshua Campbell

David Scott

Renee Williams

Kaiti Robbins

Jayme Carabello

Aaron Garrison

Lauri Shedd

Stacey McDaris

Save Oren

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

Save Oren

Still $1,398 to go. Help us build momentum.