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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=
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=
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=
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=
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=
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=
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=
Got this in the mail today from our new friends in Australia:) Thank you SO MUCH to Moyez Jiwa at the Health Design Podcast for this amazing experience, and to John Novack for helping us make this great connection. Give us a listen here: https://on.soundcloud.com/CHZRfYDGQPkk5tjq5 #CureViolet #CureGM1 #raredisease #rarediseaseawareness #gm1 #leukodystrophy #medicine #physicians #podcasts https://www.instagram.com/p/CoXpeqBp6wn/?igshid=NGJjMDIxMWI=
