It's Almost Time for the 2014 Virtual Walk for a Better Life!
The 2014 Virtual Walk for a Better Life begins August 15th and continues through October 15. A virtual walk is an opportunity to work within your community to generate awareness for Alagille Syndrome and raise funds for research, education, and advocacy. A "virtual" walk means that you can plan any sort of event or activity that works for you; some families choose to do an actual walk at a local park, while others choose to write letters or contact friends and family.
Now is the time to create a Virtual Walk team! This year we are hosting our Virtual Walk via a program called DoJiggy. Through our DoJiggy site, you can set up a team, collect funds, and pledge your support. Visit http://algsvirtualwalk.dojiggy.com to get started. Team Sophie, Team Chord, Team Connor, Jack's Pack, Team Tyler's Voice, and Team Luxhoj are just a few teams that have already jump started their Virtual Walk.
Check back soon for more information about the 2014 Virtual Walk for a Better Life!
Need help with DoJiggy or Virtual Walk ideas? Contact Wendy at email@example.com.
Symposium 2014 Surveys Available
If you attended the 2014 Symposium but forgot to fill out a survey, please download a survey now, fill it out and email it back to alagille(at)alagille.org. We want to know what you thought about the speakers, location, childcare, food and anything else that is on your mind. Thank you!
Symposium 2014 Video Available to View
In case you missed it, we have all the Symposium videos available to view on our YouTube channel. You can catch sessions you missed or watch the whole thing if you want to. Check them out here: ALGSA YouTube Channel
ALGS'er in Ireland Shares Her Story
Katie, an ALGS'er in Northern Ireland, shares her heartwarming story with the world. Watch it now on YouTube.
There’s power in numbers. Help us build our patient registry!
The ALGSA announces our own disease registry! We invite all ALGSers to join, to provide de-identified medical information to the registry to help everyone in the global ALGS community – patients, families, researchers, clinicians, and pharmaceutical companies – learn more about ALGS. The goal is improved diagnosis and medical care, as well as empowerment of patients and families through knowledge, connections, and support. If you have any questions about the ALGSA CONNECT registry, or to opt in, please contact us at alagille(at)alagille.org.
Join the ALGSA CONNECT registry