Leigh Sutherland
@AngelmanDC
My daughter, Alex Battaglia has Angelman syndrome.. I am committed to publicizing AS and finding a cure for Angelman syndrome. A cure within Alex's lifetime!
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Richard Engel shares his son's rare medical condition today.com/video/richard-… via @todayshow
A must watch for the Angelman community!
“It’s not a story that anybody wants to tell, and it was very difficult for us but we wanted to raise awareness.” -@RichardEngel
You are not alone. Sharing your story benefits all families struggling with serious rare disorders. Thank you.
A very personal series of tweets this am. We recently learned our 2yr old son Henry has a serious genetic disorder, requiring lifelong care. 1/7
#LoreTV I'm so happy they invented drugs for this. Although some have TERRIBLE side effects but still. Better than a needle in the eye
Congratulations to Dr. Beaudet! $27.9 million from NIH to support Baylor’s Knockout Mouse Project bcm.edu/news/grants/ni… via @bcmhouston
#RDDNIH FDA OOPD -Dr Rao - Need natural history studies to speed up cure process
#RDDNIH Dr Gayatri Rao FDA OOPD Natural Histories -thorough understanding is foundation of any treatment development program
#RDDH Dr Rao FDA announces new natural history grants program.
#RDDNIH Dr Petra Kafmann - streamline clinical trials with multiple review boards.
#RDDNIH goal cures in 20 yrs. Alex will be 48. Not soon enough for us!
#RDDNIH support NCATS/ Dr Austin to speed up cure process. Team work needed.
#RDDNIH Dr Austin, knows Angels - at this rate 2000 yrs to cure all rare diseases
#RDDNIH NCAT Dr Chris Austin - 6000 rare diseases - 300 fda approved treatments
@AngelmanDC Agilis is here with you working on a treatment for Angelman
Angel Alex Battaglia, age 27 & Dr. Christopher Austin, NCATS at the WDC Angelman Walk! #WalkforAngelman
Washington DC is hot! Bailey testing Angel brother Jake's bike. Stay tuned for Bailey comments in opening ceremony!
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