Why I Want a Cure

Imagine: Your daughter comes home from school with bruises on her body. No one said anything to you at pick up,no note, no email. You look at your beautiful kid and wonder what happened. You can ask your child but finding out the truth may prove impossible because your kid is nonverbal. So your only means of finding out is from the person who may have put those marks on your child. That’s my future with Laura. That is my constant fear that I have to push to the back of mind and try to ignore. When I hear the saying “most people are genuinely good” it makes me cringe. I cant rely on that with my nonverbal child. I cant just trust that.

Did you know nonverbal disabled persons are 4 times more likely to be abused in some form. And most of the abusers are caretakers (parents, teachers, aids, group home professionals, respite care workers, etc.)? Did you know that disabled persons are 80% likely to be sexually abused. And about half of them will be assaulted more than 10 times. (http://www.rrsonline.org/?page_id=944) Just think about that for a minute. Laura only has a 20% chance of not being sexually assaulted. That is outrageous, horrifying, and sickening. And I pray every day I can shield her from the evil in this world.

You may not have understood why I want Angelman cured so badly, but maybe now you do. I want to protect Laura, I want her  and all the other angels to have the same opportunities as typical children. I want her to be able to tell me why she hurts, who hurt her or just hear her say “mama” one day.

Facts:

  • If we can raise 2 million for fast to cure Angelman there is a donor willing to match it… 4 million!
  • There are known correlations between Angelman and Rhett syndrome, Fragile X, ALS, Autisim and other types of genetic seizures. So in curing Angelman you are opening the door for other sndromes to be cured as well. It doesn’t start and end with us.
  • “Compared to 30 other pediatric neurological disorders, I would make the case that Angelman syndrome is at the top—it is THE single most optimistic possibility for a cure.” – Dr. Art Beaudet, Angelman syndrome researcher responsible for identifying the UBE3A gene
  • AS has been TREATED and CURED in a mouse model….. Talk about KNOWING there is a cure and just needing the funds to make it possible.
  • FAST believes with 20 million they can cure AS in 5 years… Check out their Roadmap to a cure here: http://cureangelman.org/wp-content/uploads/2016/09/2016-Roadmap-to-a-Cure-1.pdf

This is why I want a cure for Laura and so many others dealing with Angelman. This is why I ask for donations.

If you want to donate, please donate here:

https://sna.etapestry.com/fundraiser/FoundationforAngelmanSyndrome/FAST/individual.do?participationRef=6727.0.57811879

 

#cureangelman #ourtimeisnow

 

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