The 2016 ALGSA Virtual Walk for a Better Life called YOUR name and You answered in a BIG way! We called on YOU to help make this year’s event and our organization a continued success of momentous proportions, and you were amazing!
Tireless efforts of 16 Captains and their teams for the 2016 Virtual Walk generated over $37,000 and we’re still counting. With a goal of $50,000 for this year’s Virtual Walk, we made it 75% of the way there with your incredible efforts!
What does the Virtual Walk do for the ALGS community? Here are four ways we’re immediately putting your support to work:
- We’re producing tools you can use! The ALGSA recently released a draft of ALGS Care: A Tool for Addressing Care Challenges with Alagille Syndrome. This unique resource for ALGS patients and their caregivers provides the entire ALGS community with current, research-based tools to better understand the disease and advocate for the best treatment options. Your Virtual Walk support will help us revise, fine tune, and produce ALGS Care for distribution to ALGS families worldwide.
- We’re always on the move! Over the past six months, ALGSA representatives attended major conferences and events to raise awareness about ALGS in the research and rare disease communities. This included a strong presence at the Global Genes Patient Advocacy Summit, Faster Cures Partnering for Cures, National Organization for Rare Disorders Rare Diseases and the Orphan Products Breakthrough Summit. In February 2017 we’ll be at the SBP 8th Annual Rare Disease Day Symposium: Alagille Syndrome – New Research, New Hope to share the ALGS journey with premier researchers in the rare disease field. While some costs associated with attending these meetings are offset by scholarships and stipends, your Virtual Walk support is essential to fill the funding gap.
- We’re launching vital programs for ALGS families! Targeted for 2017, the ALGSA Mentor Program, which debuted at the 2016 Symposium, will be further developed to bring together ALGS patients and caregivers in a nurturing and private environment, offering opportunities for families with different ALGS experience to get support and information from their peers. Your Virtual Walk support has enabled us to speed up the timeline on this vital project.
- We’re already planning the 2018 Symposium! The dates are set for June 22-24, 2018, and we’re zeroing in on a location. Camp Alagille and a highly interactive presentation style debuted to rave reviews this year, but we’re not resting on our laurels. We’re dreaming, scheming, refining, and improving, to bring ALGS families an even more amazing and inspiring experience in 2018. Your Virtual Walk funds help pay for deposits on the hotel site, entertainment, and kids program, printing registration materials, and so much more.
We asked YOU to answer the call of the 2016 Virtual Walk and you were awesome! Whether you raised $2 or $2000, every dollar counts. Every dollar makes a difference. We needed you to be an advocate for ALGS and the ALGSA and you rocked it!
Thank you for your tireless efforts for the ALGSA! With your support, we’re creating a better life for our ALGS Warriors and our entire community.