Do It For Declan

Declan is fighting Sanfilippo Syndrome, a terminal childhood disease often described as a children’s Alzheimer’s. Together we can find a cure.

[Do It For Declan @DoItForDeclan]

Want a cookie @MrBeast? I am looking for sponsors for my 5K event which benefits the Cure Sanfilippo Foundation. My son has Sanfilippo, a fatal disease in children often compared to Alzheimers. It’s a bitch!Please reply so I can give you details!

[Do It For Declan @DoItForDeclan]

Do it for Declan fun run and 5K. We are looking for sponsors, donors for our online silent auction, and vendors. Come out and walk/run! Register at our website!
https://t.co/DlT3RElkmT

#doitfordeclan #CureSanfilippo #5k #nonprofit @DallasRunClub

[Do It For Declan @DoItForDeclan]

December 10, 2022
851 Hensley Lane, Wylie TX 75098. Fun Run and 5K. We need sponsors, donors for our online silent auction, and vendors.

Register on our website! Support the Cure Sanfilippo Foundation. Tell your friends!

https://t.co/DlT3RElkmT

#doitfordeclan #CureSanfilippo

[Global Genes @GlobalGenes]

This is what the #2019GGSummit is all about! ♥️#raredisease

[Do It For Declan @DoItForDeclan]

@ShawnJohnson I am so happy to hear your relieving pregnancy news. I hope that everything else goes smoothly for you. As a mom with a special needs child, I truly understand the want and desire for a healthy child. #doitfordeclan #curesanfilippo

[Do It For Declan @DoItForDeclan]

@mindykaling @RAICESTEXAS @CureSanfilippoF is a non profit that funds research for Sanfilippo syndrome, a terminal disease in children that slowly takes away their abilities to walk, talk, feed themselves ... and then their lives before their late teens @DoItForDeclan

[The Mighty @TheMightySite]

A2: Remind your “typical” child that they are a great sibling. Talk to them about the differences, and help them understand why your “rare” child might need extra help or attention. Rare sibling love can be really special. #lovingrarechat

[Jonah's Just Begun @JJB4CURE]

This is not acceptable! @NHS
https://t.co/mv9iWBmawW

[Team Sanfilippo @teamsanfilippo]

Today we announce with Bioblast pharmaceutical the first clinical trial for all types of Sanfilippo ! https://t.co/3Mw6JTNgWD https://t.co/3Mw6JTNgWD

[Do It For Declan @DoItForDeclan]

Watch @BiancaNBC5 at 4pm. She will be sharing Declan’s story and bringing awareness to Sanfilippo Syndrome. #curesanfilippo #doitfordeclan https://t.co/88l8BVqi23

[Do It For Declan @DoItForDeclan]

@SenTedCruz I am one of your constituents and my son has a fatal disease, likened to Alzheimer’s but in children. Will you please share his story and the fundraiser we are doing for his 5th birthday? https://t.co/L5n5fzrwl8 #doitfordeclan #curesanfilippo https://t.co/y7mijU9xNy

[Do It For Declan @DoItForDeclan]

@RepColinAllred I am one of your constituents. Would you please share my son’s story and our fundraiser for childhood Alzheimer’s? https://t.co/H7ZdoqHvwO

[Do It For Declan @DoItForDeclan]

Let’s get the word out there. Talk about Sanfilippo. We need a cure! https://t.co/H7ZdoqHvwO

[Do It For Declan @DoItForDeclan]

THIS is a BIG DEAL! HUGE! Declan’s story will be on the 5 o’clock news TONIGHT! WFAA Channel 8! Covered by Kevin Reece. Definitely tune in if you live in the DFW area.
@CureSanfilippoF @wfaa @KevinReeceWFAA #doitfordeclan #curesanfilippo #careaboutrare

[Do It For Declan @DoItForDeclan]

Declan is turning 5 years old on 4 days and his birthday wish is LIFE! We are aiming to raise $10,555 to help fund critical research that could save his life. Please share this campaign, like, and donate if you can. https://t.co/88l8BVqi23 #doitfordeclan #curesanfilippo

[Cure Sanfilippo Fdn @CureSanfilippoF]

gotta whole lotta love

[Cure Sanfilippo Fdn @CureSanfilippoF]

#SavingEliza's 9th birthday is TOMORROW!

Big brother loves his sister. ❤️ visit https://t.co/ErgtgeSI4z, to help reach Eliza's birthday goal!

[Cure Sanfilippo Fdn @CureSanfilippoF]

Fun Halloween idea! 🎃🎃🎃 Reverse Trick-or-Treat to spread Cure Sanfilippo awareness locally in your area! The kids love this one. Template to print out, and directions at https://t.co/tzQoK24lxU

Thank you! #CureSanfilippo

[Cure MSD @CureMsd]

Our story is now told - this is just about one mom or one disease but the millions facing #raredisease. Please stand with us to declare #rarenotalone and help us #curemsd! https://t.co/aYCnEsjTap

[National Organization for Rare Disorders (NORD) @RareDiseases]

“We don’t have the experience in rare diseases - we can’t pretend to have it. We need to rely on experts and rely on patients to understand how the disease impacts you and your families. We need that input from you.” Current Topics from the @US_FDA #NORDSummit