Ted's Angels | Brand
Ted's Angels
Reviews
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25.01.2022 INCREDIBLE, the kindness and generosity our Angelman Community has received over the last few weeks for our fundraiser for the Foundation for Angelman Syndrome Therapeutics (FAST) in the search for treatments and hopefully a cure. Thankyou so much to all of those beautiful people who have offered their support. We’ve almost reach an outstanding $30,000 propelling the medical research for our Angels further along. This year multiple trials have begun, two being gene altering... therapies. It is our hope that we can raise enough money and attention to bring clinical trials to Australia. Thankyou again, without your support this miracle we are working on would not have much of a chance. Thankyou for caring so much about our Angels and their lives. There’s still time to sponsor: https://sleeplessinseptember.gofundraise.com.au//TedsAngel
24.01.2022 I’d appreciate anyone clicking on Share to help me raise awareness for the Sleepless in September challenge for Angelman Syndrome. The challenge is in support of FAST (Foundation for Angelman Syndrome Therapeutics) who are funding medical research into treatments and hopefully a cure. To sponsor the challenge: https://sleeplessinseptember.gofundraise.com.au... To read more about FAST https://cureangelman.org
23.01.2022 I’d appreciate anyone clicking on Share to help me raise awareness as I am 6 and a half hours into the Sleepless in September challenge for Angelman Syndrome. The challenge is in support of FAST (Foundation for Angelman Syndrome Therapeutics) who are funding medical research into treatments and hopefully a cure. To sponsor the challenge: https://sleeplessinseptember.gofundraise.com.au... To read more about FAST https://cureangelman.org
21.01.2022 As we enter into our last hours of Sleepless In September I would be forever grateful for our story to be shared. If you would like to sponsor us in the challenge: https://sleeplessinseptember.gofundraise.com.au//TedsAngel
17.01.2022 So incredibly valuable for our family to be so close to such a facility. It’s our hope Ted will one day be able to benefit from these facilities. A huge congratulations to those who pushed and rallied for it.
17.01.2022 So many different strategies for therapeutics in the pipline for the treatment of AS
13.01.2022 For anyone interested this is a FAST funded clinical trial that began in February this year. Interim results include amongst a list of other things a previously non verbal patient now using up to 9 words! We are so damn excited ... To anyone who has supported our fundraisers for FAST, Thankyou. Https://tedsangels.gofundraise.com.au
12.01.2022 More incredibly exciting research news for Angelman Syndrome! This strategy aims to replace the missing UBE3A gene on the maternal side.
09.01.2022 The more we can share this around, the more hope our Angels have, so please we would appreciate as many shares as we can get! Our Sleepless In September campaig...n was hugely successful raising almost $30,000 for FAST (Foundation for Angelman Syndrome Therapeutics). Scientists believe that there is great potential for a cure for Angelman Syndrome and the funds raised will go directly towards medical research. With multiple clinical trials having begun this year including two gene altering therapies, the future is looking very bright. In Australia it is our hope that we can raise enough funding and attention to bring clinical trials into the country. However with so many Angels being undiagnosed or misdiagnosed as having Autism, Cerebral Palsy or both, there are many people in Australia living with Angelman Syndrome who are either unaware or who are not known to the AS community. There are people living with Angelman Syndrome who need that diagnosis to be able to gain the support they need. And to know that there is hope of life changing treatment on the horizon. Not only do they need us, but we need to them. To bring clinical trials into Australia we need our whole population of Angels to be accounted for. If you know an Angel or someone who may be undiagnosed, contact your local doctor or Angelman Syndrome Association Australia to join our community. There's still time to sponsor the Sleepless in September campaign and make a real difference to the lives of some of the most beautiful people on the planet. https://sleeplessinseptember.gofundraise.com.au//TedsAngel
08.01.2022 Seizures are part of Angelman Syndrome and something we have had to deal with particularly this week. For anyone close to Ted, it’s important that you familiarise yourself with what seizures can look like so that you know to get help when needed. If you’re unsure I can help you to understand.... it is to see though Thanks to those of you who have supported us, we are all a little exhausted. ... #epilepsyawarenessmonth #angelmansyndrome #cureangelman #epilepsyawareness
07.01.2022 This is a real tear jerker for me. It would help to spread awareness. Are we able to get a few shares?
07.01.2022 If you’re doing Sleepless In September with me or if you’re one of our kind and generous sponsors you can join the event page where games will be running to keep us all awake. AND if you’re desperate for sleep you can win some.
06.01.2022 We would be forever grateful for anyone to share
04.01.2022 In Australia we have under 600 known cases of Angelman Syndrome. With AS affecting 1 in 15,000 people this means either there are Angels out there either undiagnosed or misdiagnosed. I’d appreciate anyone clicking on Share to help me raise awareness for the Sleepless in September challenge for Angelman Syndrome. By raising awareness it may mean that a real diagnosis is reached for our undiagnosed or misdiagnosed Angels. This means not only can they get the support they need... by having a diagnosis but by having more numbers in our community we have more chance of bringing clinical trials to Australia. The challenge is in support of FAST (Foundation for Angelman Syndrome Therapeutics) who are funding medical research into treatments and hopefully a cure. To sponsor the challenge: https://sleeplessinseptember.gofundraise.com.au To read more about FAST https://cureangelman.org
04.01.2022 Oh the reflux no doctor would give Ted medication for that. (What are they holding out for!!??) 3 hours to feed (1 hour at least to latch) lots of screaming and because of low weight I had to do 3 hourly feeding. Somehow I kept enough weight on him...I do not know how. Why wouldn’t I just bottle feed!? Well 2 reasons. ... 1. Bottle feeding was just as hard 2. I had no bond with Ted. I wanted him to want me. I know that heartbreaking cry from having Grace and I desperately wanted it again. And the third is I ain’t a quitter. I’d do anything for him. (A good and bad quality!) There was no way to get help, I had a Caesarian and wasn’t supposed to be driving, my husband was battling drought every second of the day and wasn’t available and my parents and sister were overseas. I was alone with no support and with half an hour to town it was impossible for me to hang washing on the line let alone go to town to see a doctor and try to keep feeding. AND I was getting maybe 1-2 hours sleep per night. Somehow I had to get washing done EVERY day because he would get every single outfit wet from milk spillage, including all of my clothes down to my underpants. Every day the clothesline was full. Plus a toddler under 2. Plus running a business, plus feeding everyone and keeping a house even remotely tidy. This went on for months. And months.
