Alagille Syndrome Alliance

RareARTist Contest is open now through Sept 13, 2024. A few years back, one of our community kids, Ella, won the contest and her art now hangs in the EveryLife Rare Hub office where the ALGSA's new physical address is located! How cool is that??

"The Rare Artist Program was established in 2010 to exhibit the unique gifts of individuals impacted by rare disease to tell their story through art. Now in year 14, the Rare Artist Annual Contest is focused on providing a national platform for artists to advocate through visual artwork and poetry, along with accompanying artist statements. Rare Artist finalists participate in individualized artist-to-advocate coaching to strengthen their advocacy voice. Rare Artist awardees are presented with checks and invited to speak during Rare Disease Week on Capitol Hill in Washington, D.C. Their artwork is showcased throughout the year at various patient and biopharmaceutical conferences, displayed at the Rare Hub, social media, and website posts."

Contest Details/Rules/Instructions here:
https://everylifefoundation.org/rare-artist/?utm_medium=email&_hsenc=p2ANqtz-9Eit8sWcw1XincAIoo8uZx6omug4YWDK5bnLAvo4g_-DSqIKnMnfVB0WYFp-jFTwsgsUmP1M1W1oewyvzT1aWiBPQWKg&_hsmi=322890522&utm_content=322890522&utm_source=hs_email

Check out ALGSA Mom, JoAnna Palinchak, and daughter Ella, talking about Ella's art and the importance of getting out and advocating for rare disease!
https://everylifefoundation.org/portfolio-item/happy-flowers-in-tall-grass/

Happy Flowers in Tall Grass - EveryLife Foundation for Rare Diseases Ella Palinchak

Dr. Molleston, at Riley Children's Health, has served many Alagille families in and around Indiana, Ohio, and beyond. She has impacted them so positively and has remained a steadfast expert in the field with whom we trust and admire. We send our very best to her!!

"Dr. Jean Molleston steps down as chief of the GI, Hepatology and Nutrition division at Riley, but she will continue shaping the care of patients and the careers of medical students."

Parents are grateful for physician’s care: “She saved our son’s life” Dr. Jean Molleston steps down as chief of the GI, Hepatology and Nutrition division at Riley, but she will continue shaping the care of patients and the…

Super excited to kickoff our first recurring support group for caregivers this Thursday, Aug 29, at 5pm EDT. If you have not registered yet, please do asap.

We had a great zoom on caregiving with Dr. Al Freedman recently. Those who attended really enjoyed learning about him, his background, and that he will be working with the ALGSA through our Essential Mental Health program. We encourage caregivers - parents, grandparents, siblings, or guardians - of ALGS patients to join.

Register today!
https://us02web.zoom.us/meeting/register/tZUqcu2oqTIrG9TRbYPdYKcGOSNhmLj_k-2Q

Whether you are looking for ways to reduce sugar intake, eliminate food dyes and additives, or increase protein Raising Well Kids has great resources to get you started. Lunchbox meals and after school snacks have never looked better!

2025 Inaugural Cholestatic Liver Disease Summit with patients, families, and patient advocacy organizations for , , and .

June 26-28, 2025, in partnership: Alagille Syndrome Alliance, PFIC Advocacy and Resource Network, Inc., BARE Inc., and Children’s Hospital Colorado.

Brilliant Scientific Meeting - June 26
Interactive and Engaging Research Roundtable with all stakeholders June 27
Scientific Research Roundtable - June 27
Family conference for all 3 disease states - June 27 & 28

Mark your calendars!
Inquiries?
Email: [email protected]

2025 Inaugural Cholestatic Liver Disease Summit with patients, families, and patient advocacy organizations for , , and .

June 26-28, 2025, in partnership: Alagille Syndrome Alliance, PFIC Advocacy and Resource Network, Inc., BARE Inc., and Children’s Hospital Colorado!

Brilliant Scientific Meeting - June 26
Interactive and Engaging Research Roundtable with all stakeholders June 27
Scientific Research Roundtable - June 27
Family conference for all 3 disease states - June 27 & 28

Mark your calendars!
Inquiries?
Email: [email protected]

If your child needs help explaining Alagille Syndrome to friends and teachers, these one page resources may be able to help! The three versions of our "What is Alagille Syndrome?" one pager are designed to be age appropriate and meet your child where they are in their development and their understanding of ALGS. Download your copies from our website here -->> https://alagille.org/algsa-jr-program

We want to see your back-to-school photos! Send us your best back-to-school pics to be included in the fall edition of the ALGSA Jr. the Magazine!

Email your photos to [email protected] by September 15th to be included!

Need a copy of our spring or summer edition of ALGSA Jr. the Magazine? Just ask Stephanie!

This resource, "Navigating IEPs and 504s Quick Reference Guide," goes hand in hand with the webinar recording we shared yesterday. This quick reference document includes links to US state specific Special Education Departments as well as differences and commonalities regarding each aspect of the plans.

Download your copy here -->>https://alagille.org/wp-content/uploads/2024/04/ALGSA-Navigating-IEPs-and-504s-Quick-Reference.pdf

Check out the recording from our "Navigating IEPs and 504s" virtual meeting with ALGSA community members, parents, and topic experts, Dr. Chanda P Turner, Stephanie Mullett, M.A. ECSE, and Jennifer Aponte, J.D., as they lead this virtual detailed educational event to help parents of young ALGS patients best manage their medical needs at school with the help of these national tools and resources.

If you have specific questions about IEPs and 504 Plans, please email [email protected].

View the recording here -->> https://drive.google.com/file/d/1wvnYFFdCxhOUxe_NwRkdk4X3I8yV7KuW/view?usp=sharing

This week we will be sharing our Back-to-School resource series! Watch for helpful resources and links every day this week.

This Classroom Guide, "Succeeding in the Classroom with Alagille Syndrome," helps parents, teachers, and school administrators facilitate a successful school experience for a student with Alagille Syndrome.

For back-to-school, we are offering these in hard copy FREE OF CHARGE! Please message [email protected] to request a copy.

You can also download the digital version here -->> https://drive.google.com/file/d/1SQrDn0tySxCkNYffXaVTjLz7x1zLBTcf/view

Thank you, Omar Velasquez and Valarie Velasquez for your vulnerability and openness while sharing your family's journey with ALGS. You are and will always be an ALGS Warrior family. Your experiences will continue to help families on their own personal journey in honor of your sweet Delila.

A big thank you to the great team at Rare Disease 360, our publishing and media partner who has been there with us for the last several years sharing meaningful stories, key opinion leader and science related pieces, ALGS articles, and helping us address medication access issues in the background with great success. You continue to help us raise awareness and stand beside us in driving our mission home for the families. Thank you, thank you!

Remembering Delila and navigating loss: an Alagille syndrome family story - Med Journal 360 Omar and Valarie Velasquez share the story of their daughter Delila. This video was produced in partnership with the Alagille Syndrome Alliance.

Florida, Georgia, South Carolina families: If the impact of Hurricane Debby has limited your ability to care for your Alagille Syndrome loved one, our Continuity of Care program may be able to help. Please reach out to us at [email protected].

Our Essential Mental Health Program has two new offerings, details below. We are thrilled to be working with Dr. Al Freedman, rare disease father and psychologist, as facilitator for these upcoming sessions. Now through the end of the year, watch for more new events and recurring support groups coming!

Zoom event:
"Meeting the Challenges of ALGS in the Family: A Session for Caregivers"
Thursday, August 8, 5pm EST
Register here in advance: https://us02web.zoom.us/meeting/register/tZAtfuiopjsvGN3TYGc253yhaQxf_BBdBhfN

New Recurring Support Group:
"For Caregivers of Individuals Affected by ALGS"
Kicking off Thursday, August 29, at 5pm EST
Register here in advance:
https://us02web.zoom.us/meeting/register/tZUqcu2oqTIrG9TRbYPdYKcGOSNhmLj_k-2Q

In honor of all those who have passed with Alagille Syndrome, we pay tribute to their memory and acknowledge the tremendous strength and courage of each Warrior and their family. We come together as a community to show our support.

Today we honor Mathew Woodland (21/12/1984 - 25/7/2024), Mathew’s children Jake and Rosie whom he loved so much, their mother Stacey and his step children Holly and Logan, his father Chris and stepmom Marion, sister Michelle and her children Cerys, Keiran and Callum.

The next Teen Advisory Council meeting will be on Sunday, August 4th at 7pm EST. This group is specifically designed for 13–19-year-olds with Alagille Syndrome or siblings! Email [email protected] for the meeting link.

Looking for an easy way to support The Alagille Syndrome Alliance? You can add The Alagille Syndrome Alliance to your Community Rewards choice under your Kroger Customer Account by following these easy steps:

1. Log on or create an account with your local store.
2. Search for Community Rewards under "My Account".
3. Search for the Alagille Syndrome Alliance by name or by code.
4. Share with family and friends in your area to boost the Alliance!

State: Store Name/Code
Alaska: Fred Meyer VB091
Arkansas: Kroger AB238
California: Ralph's QC174
Southern California: Food4Less KH958
Colorado: King Soopers and City Market TC100
Idaho: Fred Meyer VB091
Illinois: Food4Less KH958
Indiana: Food4Less KH958
Michigan: Kroger TC036
Mississippi: Kroger AB238
Oregon: Fred Meyer VB091
Tennessee: Kroger AB238
Texas (Houston Area/South West Louisiana): Kroger HF946
Texas (Dallas and North West Louisiana): Kroger RE394
Washington: Fred Meyer VB091

Happy Sunday!!

Meet the Gladstones from Australia!

"Peighton’s journey with ALGS has shaped our family in unexpected ways. It’s taught us to cherish each moment and celebrate every small victory. While it’s presented its challenges, navigating Peighton’s care has strengthened our bonds and highlighted the importance of community support."

Read the full story -->> https://alagille.org/gladstone-family/

There is still time to complete this important survey!

Earlier this year you may recall the ALGSA released a preliminary survey for our U.S. patients, parents/caregivers, and bereaved caregivers on “What is the cost of Alagille Syndrome?.” Thank you to all who took that survey! This served as a small sampling and preliminary view of an overall psychosocial and economic impact and cost of ALGS. The results of the preliminary survey beneficially contributed insights which helped in the building of our larger more comprehensive survey, now ready.

We invite U.S. ALGS families (patients, parents/caregivers, bereaved parents or family members, and adult siblings or other family members of ALGS patients) to participate in this comprehensive survey that continues to focus on the psychosocial and economic costs and impacts of ALGS. It is estimated to take 60 minutes to complete.

Your input is valuable in truly understanding the cost of Alagille Syndrome and will help us to fill the great knowledge gap that exists on the burden of disease and understanding of the psychosocial and economic impact it has on patients and their family members. Your input will also help steer the direction of future and upcoming research on the cost of ALGS, globally. Filling this gap will further elevate our stakeholders’ understanding and help to influence ALGSA programming, drug development for ALGS patients, science and research initiatives in the field of ALGS and related areas, policy, and will truly help us continue our fight.

https://www.surveymonkey.com/r/J8KSKLT

In honor of all those who have passed with Alagille Syndrome, we pay tribute to their memory and acknowledge the tremendous strength and courage of each Warrior and their family. We come together as a community to show our support.

Today we honor Brylejones Baraka Mwangi (October 23, 2019 - June 16, 2024), his mother Lydiah, father Habel, sister Jael Wambui, and his extended family and friends.

The second ALGSA Jr Magazine is here! It's jam packed with articles, activities and information for the kids in the ALGS community.

If you would like a copy sent to you, please email your U.S. mailing address to [email protected].

Digital download will be available as well for those living outside of the U.S.

Hallo ich Heiße Dunia und bin Mama von 2 Wunderbaren Kinder. Lazo Ist 1,5 Jahre Alt. Als ich im 7ten Monat Schwanger war, wurde mir Fruchtwasser entnommen und somit bei Lazo das Alagille Syndrom diagnostiziert. Lazo kam mit Wenig Sauerstoff und einen Offen gehaltenen Ductus zu Welt. Wir waren von seiner Geburt bis zu seinem 1ten Lebensmonat im Krankenhaus. Weder meine Tochter Lava noch ich haben das Alagille-Syndrom. Lazo wurde schon 3x am Herzen Operiert und beim letzten mal hatte er während seiner Operation einen Herzstillstand. Ich wusste aber das er Stark ist und Stark zurück zu mir kommt ! Lazo nimmt 5 Verschiedene Medikamente für seine Niere/Leber und seinem Herzen. Er Kratzt sich oft blutig wegen seinen hohen Leber und Gallen Werte und trotzdem lacht er viel und wir lenken ihn so oft wie es geht ab um sich nicht blutig zu Kratzen. Lazo wird in der Universitätsklinikum Kiel behandelt. Wir warten drauf das Lazo bald irgendwann eine Lebertransplantation bekommt damit er sich nicht mehr quälen muss sich jeden Tag blutig zu Kratzen. Wir warten gleichzeitig auf seine große Herzoperation am offenen Herzen. Aktuell hat eine eine Sauerstoff Sättigung von 80%. Lazo ist ein Kämper, er kämpft sich jeden Tag aufs Neue ins Leben egal wie,einfach nur um so zu leben wie andere gesunde Kinder.
Ich sage aber immer : Gewiss, mit der Erschwernis kommt die Erleichterung