<p>Project Rare is a documentary film that tells a remarkable story of hope and struggles against rare neurological diseases in children. Funded by the B Brave Foundation, the film will raise awareness of and support funding for research that leads to cures.  <br /><br />Joey Scaparotti was diagnosed with a rare neurological disorder when he was just 15 months old. After learning about his progressive and incurable infantile Gangliosidosis-1, or GM1, Joey’s parents Sam and Sara devoted themselves to giving Joey the best care possible at home. Joey lost his battle at just three years of age, but he lives on through a movement that is changing the lives of children and families facing rare fatal neurological disorders. The B Brave Foundation enhances the quality of life for children and adolescents affected by these rare ailments by supporting them and their families, empowering caregivers, and ultimately pursuing treatments and cures. <br /><br />Closely related to Tay-Sachs disease, GM1 is a lysosomal storage disorder that is caused by the absence of a vital enzyme called beta-galactosidase (GLB1) due to an inherited gene mutation. Because of the absence of GLB1, gangliosides cannot be broken down in the brain, and causes it to accumulate to toxic and fatal levels. <br /><br /><iframe media_type="2" media_id="325729090" class="youtube-replace" src="https://player.vimeo.com/video/325729090" width="560" height="315" frameborder="0" webkitallowfullscreen mozallowfullscreen allowfullscreen style="margin-bottom:20px"></iframe><br />Lysosomal storage disorders have no cures or effective treatments. They are rare and therefore research is underfunded compared to other diseases. Through B Brave and other efforts, that is starting to change.<br /><br />The University of Massachusetts Medical School is collaborating with Axovant Sciences to help fund early clinical trials for investigational gene therapies for GM1 Gangliosidosis, Tay-Sachs and Sandhoff diseases.  <br /><br />Project Rare will raise awareness of these diseases, in turn helping fund promising new research into treatments and cures. Until cures are found, B Brave also provides families struggling with a similar diagnosis with comfort, support and hope. The documentary also offers tools and resources to help family, friends and caregivers of those affected to more effectively help and comfort those affected.  <br /><br />Your donations will pay for the production of the documentary. Any additional funds will support B Brave’s mission.<br /><br />Together we can make a difference.<br /><br /><iframe media_type="2" media_id="325937701" class="youtube-replace" src="https://player.vimeo.com/video/325937701" width="560" height="315" frameborder="0" webkitallowfullscreen mozallowfullscreen allowfullscreen style="margin-bottom:20px"></iframe>
</p>

Paul & Danielle Zinn

Mary Rose Tichar

Erica Ladies Night Out

Adam Jeran

Jo Ann Ludwig Oschip

Anonymous

Jessica Kohn

Niclas Flysjö

Brittany Lapaglia

Shannon Miller

Bonnie Davis

Thomas Bares

Jessica Lindberg

George Gatta

Danielle Stuhr

Stacey McKinley

Project Rare

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

be_supporter_comments_enabled_supported_funds

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

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

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

Project Rare

Still $46,080 to go. Help us build momentum.