Michael Deleon

Chief Operating Officer and Co-Founder of Connecting Families Urea Cycle Disorders Foundation. Husband with wife and daughter affected by Urea Cycle Disorders.

[CFUCDF @CFUCDF]

Held our first Webinar for Canadian 🇨🇦 families today !!! So fun and informative 🦓❤️@raredisorders @HorizonNews @ultragenyx @aegleabio @GlobalGenes @nord @EveryLifeOrg @remember_girls

[CFUCDF @CFUCDF]

@BJsView Excited to be a part of this 🦓❤️

[BJ Viau @BJsView]

Great work today! Looking forward to bringing the next step to our friends at @CFUCDF and seeing a final piece In October!

[CFUCDF @CFUCDF]

Chronic Disease Day... who do you stay strong for❤️🦓❤️@RareDiseases @aegleabio @GlobalGenes @BJsView @HorizonNews @HorizonCEOTW @ultragenyx @RareDiseaseAdv @MetabolicSuppUK #ucdstuff

[CFUCDF @CFUCDF]

Happy Canada Day to all our Canadian UCD Zebras ❤️🦓❤️🦓🇨🇦@aegleabio @BJsView @GlobalGenes @HorizonNews @ultragenyx @RareDiseases @raredisorders @GeneticDisUK #ucdstuff

[Gomez-Ospina Lab @GomezOspinaLab]

Soon we will be measuring blood ammonia from a finger prick! Proud to be part of this effort. https://t.co/I5gM3InNSd
@ureacyclerm @MetabolicSuppUK @OrganicAcidemia @CFUCDF @RareDR

[Michael Deleon @ucdfamily_org]

@RZIMhq @ZachariasTrust @RaviZacharias Thank you Ravi for so many of the ways you helped me understand Christ. If Jesus is the way we are to understand the father, then it was you for me that helped me understand Christ. Heaven celebrates and I will miss you, until that day.

[Global Genes @GlobalGenes]

We hear you, and we're here for you. The Continuity of Care RARE Patient Impact Grant is designed to help rare families who are facing financial burdens as a result of #COVID19. https://t.co/VtmUMhfQhb

[Aeglea BioTherapeutics @aegleabio]

Learn more about Robyn and Michael's story and their mission of Connecting Families at @CFUCDF: https://t.co/Rb731phlQr

[Aeglea BioTherapeutics @aegleabio]

Thank you @CFUCDF for keeping the UCD community strong!

[CFUCDF @CFUCDF]

Had a great Zoom Meeting with some of our UCD families , even our Canadians families joined us❤️🦓@aegleabio @HorizonNews @ultragenyx @raredisorders @MetabolicSuppUK

[Michael Deleon @ucdfamily_org]

Tomorrow is a day of fasting and prayer. I will be praying for protection from COVID-19 for all Urea Cycle Disorder families around the globe. God bless all rare disease families as we come together in prayer for a quick ending to this epidemic for all immune compromised.

[CFUCDF @CFUCDF]

Fundraiser for CFUCDF 🦓❤️ https://t.co/nul2vIYUll

[Aeglea BioTherapeutics @aegleabio]

Thank you @CFUCDF for joining the Aeglea team to discuss the important work you’re doing for families with Arginase 1 Deficiency and other urea cycle disorders. It’s a great way to celebrate #RDD2020.

[Chris Johnstone @TechieSciGuy]

@JIMD_Editors Cool! If you’ve read it, share it with your colleagues, please. UCDs are among the most life threatening conditions not screened for at birth. Learn the signs! @ucdfamily_org @GlobalGenes @HZNPplc

[CFUCDF @CFUCDF]

In Texas for Rare Disease Week sharing about Urea Cycle Disorders 🦓❤️@aegleabio @HorizonNews @ultragenyx @MetabolicSuppUK @remember_girls @raredisorders @BJsView

[CFUCDF @CFUCDF]

Great article from one of our Canadian Families @MattFlesch2 @HorizonNews @ultragenyx @BJsView @GlobalGenes @MetabolicSuppUK @raredisorders @https://www.macleans.ca/sponsored/battling-isolation-by-fostering-community/

[Michael Deleon @ucdfamily_org]

UCD Family Camp is a great place for Urea Cycle Disorder dad’s to meet, share our story’s, or just hang out and have fun. There’s power in hearing someone tell a story that sounds like they’re telling your own. More info coming soon-camp registration begins next week.

[CFUCDF @CFUCDF]

Happy National Zebra Day! Show your appreciation to your care team🦓@MetabolicSuppUK @BJsView @HorizonNews @ultragenyx @GlobalGenes @EveryLifeOrg @RareDiseases @VitafloUSA @lowproliving @ThePatientExp @CureClickTeam @poapharma @miracleflights @jriley0518 @MattFlesch2