SCN2A Family Meeting

Events, Genetics, Research

Two weeks ago a team from the Bernier Lab had the pleasure of flying to Wilmington, Delaware to help facilitate testing for some amazing kiddos affected by disruptive mutations to the gene SCN2A. Our team included our TIGER study coordinator, Morgan Kelly, Post-doc and EEG specialist, Dr. Caitlin Hudac, and our clinical post-doc, Dr. Jessica Peterson!  Dr. Raphe Bernier, the principal investigator of the TIGER study, also came out to the SCN2A family meeting to give a presentation on “Dynamic Behavioral & Neural Patterns Among Children with de novo SCN2A Variants”.

Thank you to the families who participated in the TIGER study during this weekend, we are very grateful to all of you and for those who helped organize and attend the event for make this research possible! Participation involved completion of assessments and collection of EEG.

Some highlights from the conference include seeing scientists and families engaged across both days with presentations made by family members and scientists interspersed, and attending the family meeting dinner, where we were able to meet with other researchers and hear stories from families affected by this genetic event. It was a truly wonderful experience to meet some of the families who are invested in seeing SCN2A research advance, thank you for welcoming us and we look forward to future collaborative work!

Follow the link to learn more about the SCN2A family conference: https://www.scn2a.org/single-post/scn2aconference

INSAR Summer Institute Schedule 2017

Events, Research

The International Society for Autism Research is hosting a free series of six weekly seminars related to culture and diversity in autism research. These seminars are from July 13 to August 24. Check out the INSAR website for more detailed information!

Registration is free and available worldwide to those interested in autism research.

This year’s focus will be related to culture and diversity in autism research.

13 July – Dr. Aubyn Stahmer (University of California, Davis MIND Institute) opens with a seminar on access to services and services across diverse communities.

27 July – Dr. Elizabeth Pellicano (University College London) is leading a seminar about ethical considerations, specifically ethics of autism research and the relation of ethics to research participation.

3 August – Dr. Roy Richard Grinker (George Washington University) will provide an anthropological view of ASD.

10 August – Dr. Sue Fletcher-Watson (The University of Edinburgh) takes us through what we need to know and what we do not yet know about bilingualism in ASD.

17 August – Dr. Jennifer Singh (Georgia Institute of Technology) will provide an overview about the structural inequalities in the diagnosis and services for ASD.

24 August – Dr. Nidhi Singhal (National Centre for Autism India) concludes the series with a presentation on topics related to autism research in India, particularly epidemiological aspects and the development of screening and diagnostic tools. Â

Welcome Inclusion Initiative: WIN

WIN

Dr. Raphael Bernier has been a leader in the new Welcome Inclusion Initiative (WIN), which hosted its first symposium on June 27, 2017.

The Welcome Inclusion (WIN) initiative is a grassroots alliance. WIN is a public awareness and capacity building campaign that will facilitate rapid, transformative community change to promote a world of inclusion for children and adults with intellectual, behavioral and social differences through 3 key activities:

(1)Awareness: building public awareness about creating healthy and positive relationships with people with differences;

(2) Community: providing a mobile cloud-based App for people to find WIN businesses, support community connection, take action, and to collect data from self-advocates and families about services needed in our communities; and

(3)Training: providing businesses the opportunity to take a pledge and receive training for effectively serving, working with, and hiring people with difference.

THE CENTRAL 6 PLEDGE:

1. We welcome everyone with disabilities.

2. We value and strive to understand your differences.

3. We communicate with clarity, respect and patience.

4. We encourage all our customers to do the same.

5. We are here to help and accommodate you.

6. We invite ongoing conversations to improve our service.

CLOUD-BASED APP & TAKE THE WIN PLEDGE (coming soon!)

Get a decal for your business or service establishment, receive online trading, get placed on the WIN App for thousands to see!

SPREAD THE WORD
Tell your friends and family about why you support the values and practices of inclusion and share your own stories.

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