Cure Sanfilippo Gala 2020 - Mission Moments 3

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Mission Moments 3: The first Partner Family joined our Foundation in late 2014. It’s amazing to think that we now have over 95 partner families around the country and the world.
Mission Moments 3 talks more on the Foundation, a wonderful International family spotlight, and the VERY IMPORTANT research. The segment ends with some recent research updates from our Chief Science Officer, Dr. Cara O'Neill.
YOU are helping children have less suffering and bringing more potential therapies to combat Sanfilippo. The HOPE is for effective, approved, and available treatments.
Thank you to the families included in this segment: Andreas Rixer Lisa Rixer Krama era barn Christine Lee Moon William Moon Jacob's Journey Kathy Sink John Sink Do It For Declan: Cure Sanfilippo Cybill Aros-Pearson Solomon's Soldiers Christina Talbert Prayers for Parker: Searching for a cure for sanfilippo syndrome Glenn O'Neill Saving Eliza O’Neill Cara Parsons O'Neill Carolyn Worrall Love Alexa and Lacey Brittany Lagarde Samuel Lagarde Sawyer Strong: Cure Sanfilippo Jenn Fuller @A-Voice-For-Victoria Erica Power McKenzie Kirk Mckenzie Rallying for Reagan #curesanfilippo
#CureSanfilippo www.curesanfilippofoundation.org

Опубликовано:

29 дек 2020

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Комментарии : 7

@perniesweemmer51 3 года назад

You are such a gracious man! Blessings to you and your family... and the others that navigate with courage and hope the exhausting neverending terrain on this journey with you . Peace be with you! 🌈🌻🌈

@userlm2111 2 года назад

Im fascinated by your hard work; i learnt about the illness thanks to Noelle and Logan and would love to see a video where u tell us in detail about the trial Eliza had and how it worked please

@sharoncrawford566 2 года назад

People should really get Genetic testing before they have children!! It would alleviate a lot of these diseases and birth defects!! Really should be mandatory!! So sad for the children!!

@ScoobyDoozy 2 года назад

You’re a terrible person for saying that.

@marieeem 2 года назад

Sure they should and I am grateful my parents did and will before I have children however, that doesn’t take away from the fact that these parents would never wish this upon their children and we should help them, not shame them because what happened to them is horrible. Honestly my only problem is when they continue to have more children after knowing they carry these genes. Like for example I know a family who’s second child had cystic fibrosis yet continued to have three more children and their last one ended up having it too. That’s disgusting.

@masey423 Год назад

Its a complicated discussion that gets into ethics and eugenics... but as someone with an autosomal-dominant genetic disease, personally with my specific disorder, I would not have children.... it would destroy my body, but more important to me is it would destroy a child's too, 50% chance. I do agree that prenatal or pre-pregnancy genetic testing would be great if it was more widely available. Just like I said, be mindful that this discussion can very easily become unethical.

@mischa6688 2 месяца назад

I think you should at least be mindful of your words. These parents never wished for their children to have disabilities and whatnot, regardless they get genetic testing or not.