Student News

October 13, 2024

Run with ASI – Clontarf Half Marathon Nov 2024

Join Us for the Clontarf Half Marathon & 5 Mile Run in Support of Angelman Syndrome Ireland!

This November, we invite families and friends to participate in a fundraising event that brings us together for a great cause. Angelman Syndrome Ireland will be participating in the Clontarf Half Marathon and 5 Mile Run, and we need your support!

Angelman Syndrome is a complex genetic disorder that affects many children and their families. By participating in this event, you can help raise awareness and funds to support vital research and resources for those affected by this condition.

Event Link: https://eventmaster.ie/fundraising/vcampaign/JDBC5MAHMN2024FC-ASI

How You Can Help:

  1. Run or Walk: Sign up for the half marathon or 5-mile run. Whether you’re a seasoned runner or just want to enjoy a leisurely stroll, every step counts!
  2. Fundraise: Create your own fundraising page and share it with friends and family. Every donation goes a long way in supporting Angelman Syndrome Ireland and the families we serve.
  3. Cheer Us On: If you can’t participate, come out and cheer on our team! Your support means the world to us and helps raise spirits along the route.

Together, we can make a difference in the lives of those impacted by Angelman Syndrome. Let’s lace up our running shoes, rally our families, and show our support this November. For more information on registration and fundraising, please visit [insert link] or contact us at [insert contact details].

Thank you for being a part of this journey!

July 28, 2024

In the News: Kerry community walk a great success!

This weekends Irish Independent featured one of our wonderful Angelman families from Kerry. Little RóRó inspired over 250 people to attend a greenway walk in honour of her birthday 🎉

ASI are so grateful to the Morrisey-Walsh family and the people of Kerry for their support 💚💛

https://www.independent.ie/regionals/kerry/north-west-kerry-news/she-brings-joy-everywhere-that-she-goes-kerry-mother-talks-daughters-angelman-syndrome-diagnosis/a1465742430.html

July 18, 2024

Summer Picnic 2024

Join us at Clonfert Farm & Mini-zoo this July 21st at 12pm for a family picnic. There’s plenty to keep us entertained! We have a small private hire room which opens out to a picnic and playground area. There’s a large petting farm, bouncing castle, a cafe restaurant and soft-play center on-site.

January 24, 2024

ASA Scientific Research Grant 2024

January 24, 2023

February 2024 International Angelman Day

www.angelmanday.info

http://www.angelmanday.info

November 9, 2022

AAC communication workshops

October 4, 2021

Book your seat on zoom workshop.

Monday 11th October 7.30pm, Challenging Behaviour Specialist John Curran will be joining us.

December 16, 2020

€3K Access to Angelman Grant awarded.

We are delighted to have been awarded €3K today December 16th from the RTE Comic relief grant fund in conjunction with Community Foundation. As part of our Access to Angelman project we will be working to host virtual meeting and meetups in the coming months. More details to follow.

September 30, 2020

Entitlements for families

FW Booklet A-Z Entitlement Guide 2020Download

Booklet for families explaining entitlements for families. Kindly reproduced here with permission from Financialwellbeing.ie

https://www.angelman.ie/1164-2/

September 20, 2019

2019 European Alliance Grants awarded

                                                         

European Angelman  Alliance Announce 2019 Research Grant winners

ASA proudly announced the 3 recipients: Dr. Ype Elgersma (Netherlands), Dr. Ugo Mayor (Spain) and Dr. Ben Philpot (USA) –

Dr. Ype Elgersma, Professor of Molecular Nuroscience, Erasmus Centre, Rotterdam, postulates that UBE3A plays a major role in the regulation of gene expression and sets out to identify respective genes.

Dr. Ugo Mayor,, Ikerbasque Research Professor, Bilbao has a daring and novel approach to identify and validate the substrates and cofactors (including DUB enzymes) of UBE3A and to test the viability of targeting DUB enzymes as a therapeutic strategy for AS. That intrigued both scientific board as well as the international alliance of parent organizations (Angelman Syndrome Alliance – ASA).

Dr. Ben Philpot,, Associate Professor, University of North Carolina, finetunes his last discovery by looking at quantifying sleep spindles from overnight EEGs as an Angelman syndrome biomarker.

Speaking on behalf of the scientific advisory board,  Dr. Harald Sitte, : “The result of the 2018 call for research proposals has yielded a good combination of different research approaches which we hope to lead research on Angelman syndrome into a bright future. We congratulate the three awardees and look forward to follow their scientific work.”

The previous winners of the ASA Grants in 2014 and 2016 have been Dr. Geeske van Woerden, Dr. Ben Distel, Dr. Silvia Russo and Dr. Ben Philpot.

ASA is a global initiative of Angelman parent organizations.

Every country can have one representing AS parent-organisation participating in ASA. Our Scientific Advisory Board lends support and guidance to the members of the ASA parent organizations. Contact us if you wish to join or if you are interested to learn more about Angelman syndrome, ASA or the scientific challenges: www.angelman-alliance.org

For further information  – www.angelman-alliance.org Communication: Betty Willemsen (betty.willemsen@ninafoundation.eu)

Scientific Board: Harald Sitte (harald.sitte@meduniwien.ac.at)

Angelman Ireland  – admin@angelman.ie

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