3rdcall - Tumblr blog

[3rdcall]

https://lbpost.com/news/family-advocates-for-statewide-gm1-gangliosidosis-awareness-day https://www.instagram.com/p/Cred2eQPDyP/?igshid=NGJjMDIxMWI=

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Boysenberry Festival at Knotts Berry Farm! We were lucky to catch the last days of this wonderful festival, and we got our fill of boysenberry-flavored EVERYTHING! Also, Violet loves her new boysenberry lights! #CureViolet #CureGM1 #Knotts #boysenberryfestival (at Knott's Berry Farm) https://www.instagram.com/p/CrGZrp0LCsf/?igshid=NGJjMDIxMWI=

[3rdcall]

A night of race cars, laughter, golden grained beverages, and of course Brotherhood. Love to see all of you, brothers! #Pilam #notfouryearsbutalifetime #lbgrandprix https://www.instagram.com/p/CrD5IuYrR3T/?igshid=NGJjMDIxMWI=

[3rdcall]

WE NEED YOUR HELP! After a beautiful advocacy trip to Sacramento, we have gathered great support for our resolution declaring GM1 Day on May 23 in California! Awareness and advocacy matter! Let’s keep the support going for Violet and all the kids like her! Join our fight at www.change.org/CureViolet ! #CureViolet #CureGM1 #GM1gangliosidosis #advocacy #leukodystrophy https://www.instagram.com/p/Cq3_QwYPrYT/?igshid=NGJjMDIxMWI=

[3rdcall]

WE NEED YOUR HELP! We had a WONDERFUL trip up to Sacramento to garner support for our resolution to declare GM1 Day on May 23 in California. We need your support on the petition to push it over the finish line! #CureViolet #CureGm1 #RareDisease #GM1 #advocacy https://www.change.org/p/declare-may-23-gm1-gangliosidosis-day-in-california?recruiter=941286991&recruited_by_id=cad3d600-4361-11e9-93a0-abffed03acf1&utm_source=share_petition&utm_campaign=share_petition&utm_medium=copylink&utm_content=cl_sharecopy_35957005_en-US%3A3 https://www.instagram.com/p/Cq36v_2PV40/?igshid=NGJjMDIxMWI=

[3rdcall]

We’re doing some great work on behalf of the CureGM1 Foundation! Read our monthly newsletter today! UNITED HEALTH/OPTUM EMPLOYEES- The Cure GM1 Foundation is now part of the ‘United for Giving’ program that will match donations to our foundation! read below to learn more! https://curegm1.org/the-april-2023-cure-gm1-catalyst/ #CureViolet #CureGm1 #GM1 #RareDisease #Genetherapy #specialneeds https://www.instagram.com/p/CqqPVSypp8r/?igshid=NGJjMDIxMWI=

[3rdcall]

WHAT A TRIP UP NORTH! We are so grateful to the multitude of beautiful friends and family who we were able to see and spend time with. We’ll be back to for everyone we missed, we’ll catch you then! Thank you for making Violet’s first trip up north extra special!! #CureViolet #GoBears #Berkeley #UCDavisSchoolofMedicine #ucdmc https://www.instagram.com/p/CqeXYSAp0ky/?igshid=NGJjMDIxMWI=

[3rdcall]

This is Dr. Kuo and family. Once upon a time, we lived together in a small house in Sacramento and learned how to be doctors together. Now, almost 20 years later, here are reunited with our families. Great seeing you, @calkuo and Sara! Let’s not let the years pass before our next meeting! #UCDSOM #physicians #medicine #Davis #UCDavis #ortho https://www.instagram.com/p/CqdriTHv6Yo/?igshid=NGJjMDIxMWI=

[3rdcall]

We had an AMAZING day touring Pixar Studios in Emeryville, California! Being on this historic campus and learning about their film making process really struck chords with us and made us look at those beloved movies in another light. Violet loved touring the campus and loved seeing many of her favorite characters in the plethora of art pieces all throughout. Thank you for this profound and enlightening experience! #CureViolet #Pixar (at Pixar) https://www.instagram.com/p/CqcUyxqOU6u/?igshid=NGJjMDIxMWI=

[3rdcall]

THANK YOU State Assemblymember Muratsuchi for meeting with us and hearing about Violet and her fight with GM1 Gangliosidosis. YOUR SUPPORT MEANS THE WORLD! #CureViolet #CureGm1 #Advocacy (at Sacramento, California) https://www.instagram.com/p/CqYuuo8vRj3/?igshid=NGJjMDIxMWI=

[3rdcall]

HELLO SACRAMENTO LEGISLATORS!! The Cure For Violet Team will be at the Capitol today giving away free ‘A Cure for Violet’ T shirts and advocating for GM1 Gangliosidosis funding and research. Come down and meet Violet! See you all soon! #CureViolet #CureGm1 #advocacy #Gm1 #raredisease #Sacramento (at Sacramento, California) https://www.instagram.com/p/CqYIjUnJomu/?igshid=NGJjMDIxMWI=

[3rdcall]

It was a lovely evening celebrating Hacksaw with a gift from, well, @wwehacksawduggan !!! Look at the joy on his face as Hacksaw sees his name sake gifting him a pair of signed photographs! Thank you so for the swag, @wwehacksawduggan !! We are fans for life!! HOOOOOOO! #WWE #Wrestling #HacksawJimDuggan #fanboys https://www.instagram.com/p/CqJB3EjvSTz/?igshid=NGJjMDIxMWI=

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3 dudes takes the Magic Kingdom by storm on a rainy day. Unforgettable mania ensues. #AdultDisneyland #Disneyland #ʜᴀᴘᴘɪᴇsᴛᴘʟᴀᴄᴇᴏɴᴇᴀʀᴛʜ (at Disneyland) https://www.instagram.com/p/CpsrG_4v9Gu/?igshid=NGJjMDIxMWI=

[3rdcall]

Excited to speak today at the #Codexis #RareDiseaseDay patient experience forum. Listen at 1pm if you can! https://codexis.zoom.us/j/81761802223?pwd=dGxNRGREWVlPdElnWlNoMEhMQlhndz09 https://www.instagram.com/p/CpNhvt6r1cu/?igshid=NGJjMDIxMWI=

[3rdcall]

Closing time at DCA on this rainy SoCal Friday… #CaliforniaAdventure #StormWatch2023 (at Disney California Adventure Park) https://www.instagram.com/p/CpE6PRruYKu/?igshid=NGJjMDIxMWI=

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Good morning Team Violet! Our baby girl is wide awake and ready for a long day of preschool!! We are grateful for sunny mornings like this! #CureViolet #CureGm1 #raredisease #rarediseaseday #GM1 #gm1gangliosidosis #specialneeds (at Mar Vista) https://www.instagram.com/p/Co7w2DoPC8O/?igshid=NGJjMDIxMWI=

[3rdcall]

Had a lovely evening exploring the range at @topgolflosangeles ! Violet was laughing and kicking as Mommy @veenasison, Daddy, and Tita @vichikita attempted to drive their golf balls down the range! Great time! And getting ready for the @curekinleyandkennedy Charity Golf Tournament in July!!! #CureGm1 #CureViolet #GM1 #golf #Topgolf #raredisease #rarediseaseday (at El Segundo) https://www.instagram.com/p/Coci2u8LWsz/?igshid=NGJjMDIxMWI=