<div><strong>Note from Chive Charities:<br /></strong>If you’ve found your way to this fundraiser, you’ve probably already fallen in love with Simon, an effervescent 5-year-old with big dreams and aspirations, who also happens to have a rare condition called Sanfilippo Syndrome. As the most devastating disease you’ve never heard of, Sanfilippo is a rapidly degenerative and fatal disease in children. There is currently no cure or treatment. Because of the dementia it causes, it is often likened to Alzheimers’ but in children. The first $15,000 of this fundraiser will go directly to Simon’s family to fund critical items and therapy that give Simon the best shot at a higher quality of life while extending his mobility for as long as possible. Anything beyond $15,000 will go to supporting promising research that could save Simon’s life and other kids with Sanfilippo Syndrome through the Cure Sanfilippo Foundation.
</div>

<div> 
</div>

<div><strong>Simon’s birth, diagnosis, and prognosis:</strong>
</div>

<div>After a healthy pregnancy, Simon was born in May of 2016! Parents, Alina and Jeremy, were elated and in love with their one and only miracle child. He was beautiful!
</div>

<div> 
</div>

<div><img src="https://d2g8igdw686xgo.cloudfront.net/64851431_1650665043572397_r.jpeg" alt="64851431_1650665043572397_r.jpeg" width="100%" media_type="3" />
</div>

<div> 
</div>

<div>Simon was a happy baby with big smiles and great eye contact, but he had significant difficulty breastfeeding, wasn’t responding to his name or hitting his developmental milestones, and had developed repetitive play (i.e. spinning toys.) At first, his parents suspected Autism Spectrum Disorder, so they approached Simon’s pediatrician at 13 months of age.
</div>

<div> 
</div>

<div><img src="https://d2g8igdw686xgo.cloudfront.net/64851431_1650895291541543_r.jpeg" alt="64851431_1650895291541543_r.jpeg" width="100%" media_type="3" />
</div>

<div> 
</div>

<div>This led to consulting with a pediatric neurologist who ordered a medley of tests. The results of all were thankfully normal, but left Alina and Jeremy without answers. In order to help Simon with his challenges, he began receiving physical, occupational, and speech therapies at 15 months of age. Alina also ramped up teaching Simon how to use sign language since he was nonverbal at this point.
</div>

<div> 
</div>

<div><img src="https://d2g8igdw686xgo.cloudfront.net/64851431_1650664899117798_r.jpeg" alt="64851431_1650664899117798_r.jpeg" width="100%" media_type="3" />
</div>

<div> 
</div>

<div>After six months of intensive therapies, his pediatric developmental specialist assessed Simon as having only developed three months of skill. He had the skill level of a baby half of his age. This news destroyed his parents. They and the therapists had been working continuously to close Simon’s gaps in development. It's almost as if he was unable to progress any faster, but no healthcare professional, at that point, could provide a reason why.
</div>

<div> 
</div>

<div><img src="https://d2g8igdw686xgo.cloudfront.net/64851431_1650664943608716_r.jpeg" alt="64851431_1650664943608716_r.jpeg" width="100%" media_type="3" />
</div>

<div> 
</div>

<div>Despite Simon’s delays and Alina and Jeremy’s feelings that something wasn’t quite right, they continued to focus on the positives: He was slowly making progress and achieving goals; Simon slept and ate well; and he affectionately connected with them through hugs, smiles, and laughter.
</div>

<div><br /><img src="https://d2g8igdw686xgo.cloudfront.net/64851431_1650664991535728_r.jpeg" alt="64851431_1650664991535728_r.jpeg" width="100%" media_type="3" />
</div>

<div> 
</div>

<div>As Simon’s medical therapies continued, Alina and Jeremy pursued additional help for Simon. At 21 months of age, he began seeing a movement therapist to help him with his gross motor skills, craniosacral therapist to help him with his ability to speak, and chiropractor to adjust a newly-discovered head and neck bone jam. Simon began to move in ways that he wasn’t able to in infancy! It was beautiful to watch. His parents thought that they might have discovered the cause of his problems. But, they continued to pursue other possibilities as well.
</div>

<div> 
</div>

<div><img src="https://d2g8igdw686xgo.cloudfront.net/64851431_1650665077492729_r.jpeg" alt="64851431_1650665077492729_r.jpeg" width="100%" media_type="3" />
</div>

<div> 
</div>

<div>At the recommendation of Simon’s pediatric developmental specialist, he underwent an Auditory Brainstem Response (ABR) test at 25 months of age. This revealed that Simon had mild-moderate hearing loss. Alina and Jeremy were shocked and confused because he had passed his newborn hearing screen, and had gross and fine motor delays - not simply speech problems. Simon began to wear hearing aids, and his receptive and expressive language skills had begun to blossom at that point. His parents thought that they might have discovered a secondary cause of his problems. But, they had one last possibility to investigate.
</div>

<div> 
</div>

<div><img src="https://d2g8igdw686xgo.cloudfront.net/64851431_165089553654475_r.jpeg" alt="64851431_165089553654475_r.jpeg" width="100%" media_type="3" />
</div>

<div> 
</div>

<div>At 28 months, Alina and Jeremy consulted with a pediatric geneticist (after sitting on the appointment calendar for six months). She predicted that Simon had a metabolic storage disorder, and ordered a full body x-ray, abdominal ultrasound, and urine test. After two long weeks of waiting for the results, they were crushed by the news of Simon’s Sanfilippo Syndrome diagnosis at nearly 2.5 years of age. The urine test revealed the presence of elevated concentrations of glycosaminoglycans (GAGs), which meant that Simon could not break down this natural cellular waste. It had been accumulating in his body tissue since birth, and he had been abnormally excreting them in his urine. These accumulated molecules have been causing Simon’s cellular machinery to work improperly. Once enough of the toxic GAGs build up, his brain cells die and vital brain tissue is lost leaving him with permanent brain damage. Sanfilippo Syndrome is a rapidly degenerative and fatal disease in children, currently with no cure or treatment options. Because of the dementia that sets in, it is often likened to being like ‘late-stage Alzheimers’, just in little children.
</div>

<div> 
</div>

<div><img src="https://d2g8igdw686xgo.cloudfront.net/64851431_1650895646690682_r.jpeg" alt="64851431_1650895646690682_r.jpeg" width="100%" media_type="3" />
</div>

<div> 
</div>

<div><strong>Simon’s current enthusiasms and likes:</strong>
</div>

<div>Simon has largely plateaued in his development. Despite his struggles, he is sweet, and most often, happy. Simon brings joy to those in his presence. He’s warm and loving.
</div>

<div>Simon appreciates flags (such as the U.S. flag) and stop signs. He enjoys shooting hoops, running, playing catch, building with blocks, learning American Sign Language, playing on playground equipment, listening to storybooks, singing songs, hugging his stuffed animals, blowing bubbles, building jumbo floor puzzles, counting, saying the letters of the alphabet with the sounds that they make and words that begin with them, and spelling. His parents and therapists are working to maintain his skills for as long as possible, so that the quality of his life may remain for as long as possible.
</div>

<div> 
</div>

<div><img src="https://d2g8igdw686xgo.cloudfront.net/64851431_1650896244925985_r.jpeg" alt="64851431_1650896244925985_r.jpeg" width="100%" media_type="3" />
</div>

<div> 
</div>

<div><strong>The first $15,000 of this GFM will fund the following items for Simon and family:</strong>
</div>

<div> 
</div>

<div><strong><em>Augmentative and Alternative Communication Device</em></strong>
</div>

<div>The family is waiting for an evaluation from a therapist to determine which device will be the best fit for Simon, but here is an example of a device:
</div>

<div>A portable symbol communicator, which can store up to 36 messages, has a total of six removable tactile symbols that allow the user to push a button to relay a message. As a tactile symbol communicator, it is perfect for users who are blind or visually impaired. We like this device because it offers six levels of communication, with six messages per level. When setting up this device, it provides up to six seconds of record time per message.
</div>

<div> 
</div>

<div><strong><em>Weekly dinners at Casa De Luz</em></strong>
</div>

<div>Simon’s favorite restaurant offers highly nutritious meals, a calm environment and happiness, contributing to a higher quality of life.
</div>

<div> 
</div>

<div><strong><em>Spalding NBA Slam Jam Over-The-Door Team Edition Basketball Hoop</em></strong>
</div>

<div>So Simon can keep playing basketball.
</div>

<div> 
</div>

<div><strong><em>Adaptive Star Axiom Improv 2 Special Needs Stroller</em></strong>
</div>

<div>While Simon can still thankfully walk and run, he fatigues easily and needs to rest and recover while sitting in a stroller before beginning to walk or run again. He’s outgrown his current stroller by exceeding weight and height maximums because typical strollers aren’t made for five-year-olds. The Adaptive Star Axiom Stroller will allow the family to continue to take Simon outdoors. It easily glides over grass, gravel, curbs, and sand.
</div>

<div> 
</div>

<div><strong><em>Home Care Assistant</em></strong>
</div>

<div>Simon requires near-constant engagement. His ability to play independently is extremely limited and, for safety reasons, needs supervision at all times. A mom's helper allows mom to complete household chores, errands, and self-care activities.
</div>

<div> 
</div>

<div><strong><em>Rock Climbing at Crux Climbing Center</em></strong>
</div>

<div>Simon has been learning to rock climb in physical therapy for one year now. He gets a full-body workout as well as improved flexibility, endurance, stamina, balance, and cardio fitness. It also focuses the mind, encourages body awareness, relieves stress, promotes ambition and personal challenge, fosters problem-solving, and builds confidence.
</div>

<div>Kids Club at Crux Climbing Center is a great way to introduce kids to rock climbing in a fun and supervised environment. Their coaches teach kids about the fundamentals of rock climbing, including climbing techniques and general climbing safety. Simon will climb, play and make new friends!
</div>

<div> 
</div>

<div><img src="https://d2g8igdw686xgo.cloudfront.net/64851431_1650665581638882_r.jpeg" alt="64851431_1650665581638882_r.jpeg" width="100%" media_type="3" />
</div>

<div> 
</div>

<div><strong>Beyond $15,000, the GFM will support promising research that could save Simon’s life and other kids with Sanfilippo Syndrome:<br /><br /></strong>The above items will all help with Simon’s immediate needs and quality of life today, and his parents are so thankful. Alina and Jeremy’s greatest hope is that Simon can live a long and fruitful life, and this is where their next need comes in. Beyond the immediate therapeutic needs, their biggest need is funding for promising research that could save Simon’s life.
</div>

<div><br /><img src="https://d2g8igdw686xgo.cloudfront.net/64851431_1650665654682953_r.jpeg" alt="64851431_1650665654682953_r.jpeg" width="100%" media_type="3" />
</div>

<div> 
</div>

<div>What Simon needs most is a cure. While the therapies will help him hold on to abilities longer and live more comfortably, Sanfilippo Syndrome is impacting him every second. Without some type of intervention, Simon will lose his ability to shoot baskets as well as the ability to talk, walk, and eat. He will suffer extreme dementia, become wheelchair dependent, and likely have seizures. This will all happen in the coming years, worsening each year, before he likely passes away in his teens. Simon’s parents will do anything to stop this from happening.
</div>

<div> 
</div>

<div>Finding effective treatments to hopefully stop the disease is the goal. This happens when promising research that can lead to clinical trials for Simon and children like him is funded.
</div>

<div><br /><img src="https://d2g8igdw686xgo.cloudfront.net/64851431_1650665744636286_r.jpeg" alt="64851431_1650665744636286_r.jpeg" width="100%" media_type="3" />
</div>

<div> 
</div>

<div>Simon’s an underdog. He shoots baskets like a superstar, but will he ever be able to be on a team? Kids with Sanfilippo Syndrome are underdogs fighting against a system that isn’t set up for rare diseases like this. Most large pharmaceutical companies aren’t interested in diseases like Sanfilippo due to the lack of profit opportunities. It’s left up to parents and parent-led advocacy groups like Cure Sanfilippo Foundation to drive and fund the research and even help get clinical trials started.
</div>

<div><br /><img src="https://d2g8igdw686xgo.cloudfront.net/64851431_1650665788723943_r.jpeg" alt="64851431_1650665788723943_r.jpeg" width="100%" media_type="3" />
</div>

<div> 
</div>

<div>Cure Sanfilippo Foundation has already helped three clinical trials get underway in less than eight years. And there is hope that new promising research for Sanfilippo Type B (Simon’s type) can proceed to a clinical trial for him and other kids… if there is enough funding.
</div>

<div> 
</div>

<div>This isn’t funding for research in some distant day. There is research right now that could help Simon, and it needs funding.
</div>

<div> 
</div>

<div><img src="https://d2g8igdw686xgo.cloudfront.net/64851431_1650897107902268_r.jpeg" alt="64851431_1650897107902268_r.jpeg" width="100%" media_type="3" />
</div>

<div> 
</div>

<div>Cure Sanfilippo Foundation has identified two new research pathways that could benefit Simon and other children with Sanfilippo. The first is a new therapeutic approach using CLR01 "molecular tweezers" that has shown promise in pre-clinical results in both Alzheimer's disease and Sanfilippo Syndrome. This therapy could reduce neuroinflammation and actually improve cognitive function for children with Sanfilippo. The second is a new stem-cell therapy project that has the potential to replace the missing enzyme for Sanfilippo Syndrome and could result in halting disease progression and bring neurorestorative benefits.
</div>

<div> 
</div>

<div>It’s a RACE to save these children’s abilities … and their lives. Nothing is more urgent than this. The more that can be raised here, the better the chances things can get going in a time window for Simon before his abilities diminish.
</div>

<div><br /><img src="https://d2g8igdw686xgo.cloudfront.net/64851431_1650897128902366_r.jpeg" alt="64851431_1650897128902366_r.jpeg" width="100%" media_type="3" />
</div>

<div> 
</div>

<div>Simon’s parents talk a lot about hope. It is a good thing, and hope is really just love …. on a mission.
</div>

<div> 
</div>

<div>Thank you to the Chive community for being part of this life-saving effort for Simon and other children with Sanfilippo Syndrome. Please help support these efforts in funding this research led by the 501(c)3 nonprofit Cure Sanfilippo Foundation, and please share with everyone you can.
</div>

Mary Dullinger

Kenny D Beach

Anonymous

Shannon Ruff

David Lasris

Robert Ore

The Chivery

Adam Coleman

Thomas Loy

Mara Lunaria

Jennifer L Moppin

Justin Stuber

Travis Hollingsworth

Simon Says "KCCO!"

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

Eligible for Profile Comment Badge

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

writePath

Stream Notification

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

ai_title_page

anyword

openai

control

manual_entry

userEmail

template_id

userId

fundUrl

isCharityCo

email

appVersion

shouldBucketIntoExperiment

partnerId

isEligibleForProfileCommentBadge

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

Enter your donation forSimon Says "KCCO!"