Spastic paraplegia type 52 (aka SPG52) is an ultra rare neuro degenerative disease with only about 30 known cases in the entire world. The disease is caused by a genetic mutation of the AP4S1 gene and affects a person’s cognitive and physical abilities. As time goes on spasticity takes over their body leaving them unable to walk or move independently (if they were ever able to gain that skill to begin with). 

Our son Dante is one of these ultra rare cases and we’ve been fighting for a cure since his diagnosis just before his second birthday. 

Currently he can’t walk or stand without assistance, speaks very few words, and has very poor fine motor skills. He works hard every day to learn how walk, talk and to play with his peers. But as he reached his fifth birthday this year, we’ve seen the affects of the spasticity on his body and how much more he struggles to do things most take for granted like sit criss-cross on the floor for story time, stand up for 5 seconds without tumbling down or ride a bike. 

And being such a rare disease, SPG52 research doesn’t get the funding or recognition it needs to help cure Dante or other patients. We’ve have an amazing opportunity for a gene therapy treatment that could stop the progression of Dante’s disease- his best chance at a cure. But we need help to raise the money it would cost to get to clinical trials and eventually the treatment. 

We need your help to raise awareness and raise funds for the gene therapy research. Follow our journey on Facebook and Instagram (@PatientWarrior52) or at PatientWarrior52.com. Thank you so much for your help and support!

Dante truly is a patient warrior in so many ways and we’ll never stop fighting for him or to #CureSPG52.

Anonymous

Donna Smith

Amber Mason

Ashley  Demmin

Audrey Weber

Sandra Forster

Pam Elsess

Taniapietrangelo@yahoo.com Pietrangelo

Lisa Skorupa

Lularoe Fundraiser

Julia  Finley

Judy Foust

Francesca  Surace 

Sarah Mulvey

Steve Smith

Ann Mummert

Patient Warrior's Fight to Cure SPG52

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; 

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

currencyCode

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

writePath

Stream Notification

start gfm intl allowed locales

Platform is iOS v11.2.0 and above

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

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

Influencer - Prod

US fundraisers and US users

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

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

Logged In Users

CH Donation Upsell audience

Android v10.6.0 and above

userCurrencyCode

Localized Currency

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

Patient Warrior's Fight to Cure SPG52

Still $396,635 to go. Help us build momentum.