2014 Virtual Walk for a Better Life: Ends Today!
The 2014 Virtual Walk for a Better Life began 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.
The Virtual Walk is hosted 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.
Need help with DoJiggy or Virtual Walk ideas? Check out our Virtual Walk Toolkit or contact Wendy at firstname.lastname@example.org.
New issue of Links4Life Now Available!
The latest issue of Links4Life is now available for your reading pleasure. This issue covers April to September this year which includes a wrap up of the 2014 Symposium. Other highlights from the issue include:
- Some feedback straight from ALGSA Symposium 2014 attendees
- The latest edition of the President's page - always a good read
- A short info spot about CareSync - a health records service that makes it easy for people to keep all of their medical information in one place
- A bio of our new Associate Executive Director Wendy Sparks! Wendy is our first ever employee, and she is already hard at work making the Alliance an even more effective organization to support the needs of Alagille families.
- A break down of the cost of holding a Symposium and some inside info on where we come up with that money!
- Last but not least a bio on an ALGS family.
You can view the latest issue on our Links4Life page or download it here.
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