Angelman Syndrome Community Malta

22/11/2023

The biggest concern of the of these persons with is who will take care of their after they 😢.

[Towards the of persons with Disability, page 28]

If you are interested in attending, kindly confirm your attendance and participation on the link below by Friday 24th of November: https://forms.gle/Dt4QKqghEw9gGWBN7

19/07/2023

As part of APS Bank plc’s strategic initiative to promote diversity, equity and inclusion, speakers from the Committee on the Rights of Persons with Disabilities (CRPD) presented the Celebrating Diversity Breakfast Series.

19/07/2023

19/07/2023

03/04/2022

Myth-buster - Not all seizures see the person jerk or convulse.

Some seizures are more subtle and may only be
noticed by someone who knows the person well.

Sometimes only the person knows they are having a seizure because there are no visible signs.

Find out more about the different types of seizures via our seizures explained factsheet: http://ow.ly/BLMg50Iv7Yy

27/03/2022

02/03/2022

Help Rachel Martin raise money to support AngelmanUK (previously ASSERT)

28/02/2021

Today we celebrate . The long-term goal of this day is increased equity for people living with rare diseases and their families. In practice, this means eliminating barriers that prevent their full participation in society, as well as social opportunity and equitable access to health and social care, diagnosis and treatment. There are over 300 million people around the world living with a rare disease. Rare is Many. Rare is Strong. Rare is Proud.

20/02/2021

FAST funded researcher, Dr. Kevin Nash reports that UBE3A is present in the spinal fluid of non-AS rodents and humans, but not in those with Angelman syndrome. He also discovered that UBE3A is found outside of neurons which has not been noted before. This could result in new discoveries of the protein’s function as well as further support of using UBE3A as a biomarker in upcoming clinical trials.
https://pubmed.ncbi.nlm.nih.gov/33474832/

20/02/2021

FAST has collaborated with the Simons Foundation Autism Research Initiative (SFARI) to launch the International Angelman Syndrome Research Council (INSYNC-AS). Using a robust integrated approach, the Council will evaluate and drive research initiatives in Angelman syndrome (AS) and other neurodevelopmental disorders (NDDs).

Dr. John Spiro, interim director of SFARI, stated, “SFARI is excited about partnering with Dr. Allyson Berent, and the entire Angelman syndrome community, to capitalize on what they have learned from their successes in bringing potential therapeutics to individuals with AS. SFARI hopes to keep the momentum going to make those treatments even more effective and durable, and to extend the lessons learned to other neurodevelopmental disorders with known genetic causes. FAST’s sense of urgency and laser focus on moving findings from the lab into clinical trials is an inspiration to all of us who work in this field.” For the full press release visit: https://www.globenewswire.com/NewsRoom/ReleaseNg/3984717
For a more robust explanation of INSYNC-AS, visit: https://bit.ly/3dugHBg

16/02/2021

Celebrity, Mark Hamill - Tweet to raise awareness for Angelman syndrome

16/02/2021

15/02/2021

15th Feb, International Angelman Day - a day to share awareness and information on Angelman syndrome, to your local communities.

15/02/2021

Feb 15th - International Angelman Day.
A day for the global Angelman community to come together and share information on this rare condition.

15/02/2021

Fact 1 of 15 on the 15th Feb, International Angelman Day. Angelman Syndrome is caused by one of several different types of disruptions of a region of chromosome 15.

11/02/2021

Angelman SyndromeAngelman Todaywww.AngelmanToday.comwww.facebook.com/angelmantodaywww.twitter.com/angelmantodayProfessor Hans Von Puppetwww.youtube.com/Profe...

13/01/2021

An unfortunate reality - harsh truths

I have been following the disability sector for almost 35 years.  My passion started as a result of a government scheme offered to sixth form students.  At the time, the education

21/12/2020

There are many causes and reasons why a seizure may occur. Therefore it is important to note down and identify potential seizure triggers. This will help you, your family and neurologist/epilepsy specialist nurse keep track of important information and help manage your epilepsy better.

15/12/2020

It is important to look at the person before the medical condition.

14/12/2020

It may seem as though he is lacking in some things right now but just you wait and see what he can do. In a few weeks, in a few months, in a few years. Wait. He’ll blow your socks off.

20/11/2020

Neuren Pharmaceuticals (ASX:NEU) has been given the green light from Australia's Ethics Committee to begin the final stage of its first clinical for its lead drug candidate, NNZ-2591.

15/11/2020

28/10/2020

For the first time, scientists have shown how gene editing techniques could be used as therapy for the rare neurodevelopmental disorder – Angelman syndrome.

13/10/2020

Absence Seizures

Today we continue looking at some of the characteristics of different seizure types by looking at absence seizures. This type of seizure is most common in childhood or adolescence.

27/08/2020

Due to covid increasing numbers we want the safety of our children & online schooling!. 872 signatures are still needed!