Year of AЯRE

We would like to share you the amazing journey of the AЯRE Foundation.

ASXL Rare Research Endowment (AЯRE) Foundation was launched in April to support research that will increase our understanding of the ASXL genes and to improve the treatment of individuals with congenital ASXL mutations, and it has been quite a year! These are some of our favorite moments:

Health tips and strategies
• Techniques to assist children with visual impairments
Food is your “medicine” in supporting healthy memory
Strategies for better sleep

Success story!
Amelia learns to walk.

Navigating rare disease
• Adaptive PE
• All about Augmentative and Alternative

Communication
• Cultivating a strong marriage
• Complex care – An administrative headache!

Learn all about music therapy.

Ask an expert
• Q&A with Dietician Dee Madore
• Gene therapy and editing Q&A with Dr. Loren D.M. Pena

2018 Inaugural ASXL Research Symposium was a huge success!

2019 calendars still available!
Give the gift of support for children with all types of ASXL syndromes. From December 1, 2018 through January 31, 2019, anyone who donates $30USD or more to AЯRE will receive a beautiful 2019 AЯRE Foundation Calendar.

Thank you for being part of our AЯRE community. We wish you a joyous, festive and happy holiday season!

Cheers,
AЯRE Team

ASXL Conference – registration now open

2018-6-23 ASXL Research Symposium Agena

More information about the first Research Symposium about all ASXL Families you can find on the website of the AЯRE Foundation.

Register here: registration asxl