LEVEL UP for ALGS | FIGHT for a Better Life

LEVEL UP for ALGS | FIGHT for a Better Life supporting Alagille Syndrome Alliance
Alagille Syndrome Alliance

About LEVEL UP for ALGS | FIGHT for a Better Life

The ALGSA's FIGHT For A Better Life event is the Alagille Syndrome Alliance's largest annual fundraising campaign, and this year we will LEVEL UP for ALGS! 

The 'FIGHT' is a virtual, team-based event held September 1st to October 15th of each year. During this time, ALGSA stakeholders including ALGS families and friends, create teams or individual fundraisers with financial goals in mind. This is done in support of reaching the ALGSA's overall fund-raising goal. Each team or individual fundraiser will reach their goals by having their own in-person events or online fundraising initiatives. In the past, teams have held pop can drives, shoe drives, restaurant fundraisers, auctions, yard sales, and online fundraisers. Some new ideas for this year's LEVEL UP theme - PacMan or Super Mario tournament or a video game trivia night! 

This campaign funds ALGS programs and the development of opportunities for ALGS families around the world. Programs include the financial assistance program, educational resources, disease awareness, travel scholarships and event participation. Opportunities include connecting families to scientific and research projects, outlets to share their rare disease story, initiatives where they can inject their patient voice, and events they can participate in or even lead. 

Create a team or individual fundraiser today. Unite together with ALGS families, friends, and Alliance supporters from around the world to reach our FIGHT goal! Make a big difference in the lives of those living and dealing with Alagille Syndrome. Let's LEVEL UP together! 

Date

Starts at:  September 1, 2022 12:00 AM
Ends at:  October 15, 2022 12:00 AM

Location

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Contact

Cher Bork
901-286-8869
alagille@alagille.org

FIGHT for a Better Life: Why participate?

Choosing to participate in the ALGSA's FIGHT for a Better Life Campaign is a commitment to positively impact the families living and dealing with Alagille Syndrome. The primary purpose of this event is to fund ALGSA programs in science and research, the ALGSA family financial assistance program, the symposiums and scientific meetings on ALGS, educational programs, and many more meaningful opportunities Alagille families all over the world need and deserve. LEVEL UP today and help us beat ALGS! 

Teams, individuals, families, and businesses join the ALGSA's largest annual fundraising campaign September 1 - October 15! Read below for information on new rewards for participating teams! Let's LEVEL UP for ALGS!

Personalized LEVEL UP Donation Cards!

Fill up your LEVEL UP cards with donations, and win prizes!

For your customized LEVEL UP donation cards, please send along your FIGHT team name and the photo you would like to use on the card to alagille@alagille.org. We will send your custom card to you for downloading! 

Each card gives you the opportunity to collect donations outside of the team page. Take your card to friends, families, neighbors, and local businesses. Mark off the dollar amount as you collect it to fill up your card. Each card holds a different amount in donations. After completing each card and collecting the donations, your team will receive a great prize!

Completing LEVEL 1 (your first card worth $250 in donations), each official team member will receive an ALGSA tshirt (up to five team members)

Completing LEVEL 2 (your second card worth $500 in donations - a total of $750 raised), your team will win your choice of a mini retro arcade machine with built in games

Completing LEVEL 3 (your third card worth $1,000 in donations - a total of $1,750 raised), your team will win a retro plug in and play video game console with built in games

Completing LEVEL 4 - any total amount raised over $5,000, and your team will be in the running to win a PS5 gaming console

LEVEL UP today! 

Team Spotlight: Team Reece!

We are Team Reece. Our son, Reece, who is 3 years old, was diagnosed with ALGS at 2 months old. He had very significant liver involvement in addition to kidney & skeletal involvement which led us to liver transplant on June 27. Reece continued to have significant feeding, nutrition, & growth challenges since birth but most significantly suffered from extreme pruritus despite exhausting all anti-itch medications which caused him to never sleep through the night. Reece also continued to develop worsening & increasing number of xanthomas all over his body which are painful and itchy. 

Reece is now almost 4 weeks post liver transplant and is doing well. We are so very grateful for this chance for a new healthy life free from itching, xanthomas, improved nutrition, growth & much improved sleep! For the first time since he was 1 month old, we can see the whites in his eyes and is no longer jaundice in his face! God is good!

We have navigated these tough times through the incredible support we have received from our families, friends, neighbors & the ALGSA. We are so very grateful for the support & knowledge we have received from the Alagille Syndrome Alliance & Facebook group over the past three years. Thank you ALGSA for all your time & research spent FIGHTing for a better life for our ALGS warriors. Team Reece will continue the FIGHT.