Ten years ago, Lester and Noreen Jessop welcomed a perfect beautiful baby boy named Daron, into this world. Daron brought with him so much love. He appeared to be like every other kid going through all the normal phases of life, learning to crawl, talk, laugh and play. He was his daddy’s sidekick, he loved to ride in the big equipment and played with his toys as if running his own company like daddy. Everything about Daron seemed to be so normal, that it baffled the doctors that he could never learn to walk on his own. At age four Daron started to regress little by little each day, he lost his balance more easily and wasn’t able to catch himself when he fell anymore. Right after Daron turned 5, in 2013, Lester and Noreen extended the family with a set of twin girls named Angela and Aubrey. During the first year of their life Daron continued to get worse, it was common to see Daron with a bandage on his chin where it had split open from him falling and bruises on his knees from crawling, as that was his only way of getting around. During 2014 Lester and Noreen became more concerned with the declining health of Daron and the lack of major milestones with the girls. After many, many visits to the ER and by the suggestion of a doctor, Lester and Noreen started having genetic testing done on all three children. The genetic testing results started to trickle in, but there was no definite news as to why Daron’s health continued to fade and why the girls weren’t progressing. With every result that had no answers more testing was done. Testing this, testing that, hoping for the best. Lester and Noreen were becoming desperate for answers, every month that passed Daron was getting worse. The year he turned eight, when he should have been going to second grade, his muscles were losing mobility taking away his ability to feed himself and eventually the ability to eat. Finally, after all the desperation Lester and Noreen were given an answer. Unfortunately, the news was a death sentence for all three of their children. The diagnose was Pantothenate kinase-associated neurodegeneration (PKAN). Once they knew the diagnoses, Noreen started researching everything connected with PKAN and came across a group of doctors in Portland Oregon that have dedicated the past 25 years to researching this disorder and had treatment in the research stage that could potentially stop the progression of the disease. Noreen and Lester immediately set up an appointment to bring Daron, Angela and Aubrey in to see these Doctors. On January 25th, 2018 at their appointment at OHSU Hospital in Portland, the doctors evaluated the children and took culture samples of their DNA to continue their research. During the visit with Dr. Susan Hayflick and Dr. Penelope Hogarth, Lester and Noreen were told research results had come in, that could change the lives of their children. Not only had they found something that could stop the progression of the disease but could start the healing process, not only for their 3 children but for over 200 more children in the U.S. that are suffering from this disease. Now we are joining the journey to get this medication to the clinical trial stage. In order for the medication to be made and the trials to take place, the Spoonbill Foundation, headed by Dr. Hayflick and Dr. Hogarth, needs $2 million in donations. So, we ask you to please search your heart and join us in our Give So They Can Live, fundraiser. If you would like to find out more information about PKAN and these wonderful doctors who have dedicated their lives to finding a cure, please visit <a href="http://nbiacure.org/learn/nbia-disorders/pkan/" target="_blank"><a href="http://nbiacure.org/learn/nbia-disorders/pkan/" target="_blank" class="" rel="nofollow noopener noreferrer">http://nbiacure.org/learn/nbia-disorders/pkan/</a></a> &amp; <a href="http://nbiacure.org/spoonbill-foundation/" target="_blank"><a href="http://nbiacure.org/spoonbill-foundation" target="_blank" class="" rel="nofollow noopener noreferrer">http://nbiacure.org/spoonbill-foundation</a></a> Follow their journey on facebook @givesotheycanlive www.facebook.com/givesotheycanlive/ <img class="not-resizable" src="https://d2g8igdw686xgo.cloudfront.net/27748310_1518661631.4912_funddescription.jpg" alt="" width="100%" /> <img class="not-resizable" src="https://d2g8igdw686xgo.cloudfront.net/27748310_1518661649.1186_funddescription.jpg" alt="" width="100%" /> <img class="not-resizable" src="https://d2g8igdw686xgo.cloudfront.net/27748310_1518661666.8743_funddescription.jpg" alt="" width="100%" />

Anonymous

Amy Bowler

Steve Chappell 

Elena Cothalis

Maxene  Jessop

DAVID STAHELI

Travis Jessop

Kerri Smith

Hunter Schwager

Tonia Berberich

Marilynn Metz

Melissa Spitzer 

Marissa Heilig

Wanda Pimentel 

Allison Trierweiler

Give So They Can Live

platform

Platform is iOS

Android

Adyen Google Pay Development Audience

$opt_dummy_attribute

English only

Deprecate Stripe Legacy

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Adyen V6 Bene Transfer & MyMoney Campaign Organizers - test01

Bene transfer V6 and AdyenV6MyMoney Campaign Organizers - production

OneTrust next-app audience

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NextDoor Share Option Users

Fundraisers with Reactions feature capability

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fund country is US and user language is English

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Streaming widgets beta user

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GoFundMe Employees

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Mark Rieth IP Address

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desktop

Android v12.11.0 and above

Platform is Android

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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)

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fallback mode accounts

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Auto Thanks Feature Audience

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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

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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

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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

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openai

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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

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Localized Currency

v11.5.0 and above

testAudience

pathname

Survicate

appVersion is at or above 12.8.0

Non-charity fund

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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

Give So They Can Live

Still $25,194 to go. Help us build momentum.