<div>Haley's Journey- <a href="https://youtu.be/EyDEhE2aKQI" target="_blank" rel="noreferrer noopener"><a href="https://youtu.be/EyDEhE2aKQI" target="_blank" class="" rel="nofollow noopener noreferrer">https://youtu.be/EyDEhE2aKQI</a></a>
</div>
<div><br />
</div>
<div>From Haley’s parents, Matt and Emily Haus:
</div>
<div><br />
</div>
<div>In October of this year, our daughter Haley, through genetic testing was diagnosed with a rare brain disease.This disease is so rare, it is known only by the gene that is affected, SLC6A1. SLC6A1 related disorders cause severe movement and speech disorders, developmental delays (all areas), low tone, features of autism, and epilepsy.
</div>
<div><br />
</div>
<div>From the very first few months of Haley’s life we suspected her difficulties were abnormal. Learning new skills was extremely hard for her and her development was very delayed. She also had a variety of abnormal movements which we now understand have been seizures all along.
</div>
<div><br />
</div>
<div>Haley is now almost 3 years old. She is the sweetest girl, our absolute joy. She is naturally loving, good at sharing, and the best big sister. It’s hard to watch her struggle with things such as balance, speech, vision, body awareness/depth perception and feeding herself. Focusing and completing pretty much any simple task is difficult for her due to eyelid seizures, which happen hundreds of times per day.
</div>
<div><br />
</div>
<div>Our journey with Haley has brought us to low moments, but there is hope for Haley.
</div>
<div><br />
</div>
<div>SLC6A1 Connect is an amazing nonprofit organization run by dedicated SLC6A1 families. It was actually formed just a few years ago by Amber Freed, a mom of a SLC6A1 child.
</div>
<div><br />
</div>
<div>We just returned from a symposium during the American Epilepsy Society’s annual meeting in Nashville, TN, and we are strong believers in SLC6A1 Connect.
</div>
<div><br />
</div>
<div>Thanks to donations to SLC6A1 Connect, there is some amazing cutting edge research being done around the country with medication repurposing, stem cells, and gene therapy. They are currently raising money to hire another scientist to continue research to find a treatment and cure. Two kind anonymous donors are matching up to $32,500 through the end of December!
</div>
<div><br />
</div>
<div>To be honest, we fear for our daughter’s future. Fear that Haley’s brain will atrophy (has been reported). Fear that Haley will never learn to talk well. Fear that Haley will have a drop seizure and be seriously injured. Fear that Haley will never be independent, or build meaningful relationships. Fear that Haley will get made fun of or that she will never understand Bible stories or the gospel.
</div>
<div><br />
</div>
<div>Many of these kids (Haley included) face regressions, where they lose the skills they have worked so hard to gain. Some have been able to relearn the skill and others have never gained them back. In the video we show one of Haley’s longest regressions.
</div>
<div><br />
</div>
<div>There is no way we can encompass how difficult this journey has been for our family. This cause is very real and personal to us. It’s not just a diagnosis, this is a lifelong journey for all of us.
</div>
<div><br />
</div>
<div>Haley in her first 2 years of life has seen more medical specialists, therapists and had more testing done than many people will ever need.
</div>
<div><br />
</div>
<div>Rare diseases only get attention or support by family members or individuals who are directly affected. It’s up to us families to fight for this opportunity for a better life for Haley and others. The only way we do that is to raise attention, awareness and fundraising so we can receive medical help for our children just like other well known diseases. The encouraging thing is that it is attainable for us, we just need your help.
</div>
<div><br />
</div>
<div>Please donate to and share this fundraiser, and bring hope for Haley, and other children whose future will only be as bright as we make it.
</div>
<div><br />
</div>
<div>From the bottom of our hearts, thank you. We are grateful towards you and may God bless you for your compassionate heart.
</div>
<div><br />
</div>
<div>-Matt and Emily
</div>
<div><br />
</div>
<div>More information about SLC6A1 Connect: Our patient advocacy group is funding a cure for a rare neurological disease called SLC6A1 and advancing research in epilepsy, autism and schizophrenia.
</div>

Anonymous

Mike Avila

Helen Ghebremariam

alex hoffman

Christy Loo

Pam Stout

Tiffany Nguyen

Helen Colburn

Maureen Olakowski

Nathan Greene

Mary beth Tamm

Jessica James

Kathy Thomas

Hope for Haley - SLC6A1 Connect Fundraiser

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)

Eligible for Profile Share Badge

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

ai_title_page

anyword

openai

control

manual_entry

userEmail

template_id

userId

fundUrl

isCharityCo

email

appVersion

shouldBucketIntoExperiment

isEligibleForProfileBadge

partnerId

donationCadence

isActiveFundraiser

isPartner

isMobile

npoProfileOptIn

fundIsLinkedWithMeta

hasSessionDonation

categoryGroup

isCampaignOwner

fundHasInstagramDeepLink

Native 11.3.0 and above

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

Hope for Haley - SLC6A1 Connect Fundraiser

Still $31,936 to go. Help us build momentum.