Alagille Syndrome Alliance e-news November 2017 (FIRST EDITION!)

Stay strong. Press on.
Volume 1, Issue 1
November 2017
Alagille Syndrome Alliance e-Newsletter
Welcome to THE FIRST issue of the
Alagille Syndrome Alliance e-Newsletter

We are so excited to roll out our very first e-newsletter for the Alagille Syndrome Alliance. This e-newsletter has been a goal of the ALGSA for a long time and one we hoped we'd see come to fruition sooner than later! With the growing participation from ALGS families old and new, we are working to reach more doors (and inboxes) than ever before! Fulfilling our mission everyday is our priority. Every avenue we can use to bring attention to ALGS brings us one step closer to total domination. Ok, maybe not "domination" but certainly a little closer to finding a cure! We want to build a better life for our ALGSers, and this is a step in the right direction!

"Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome."
November 2017 issue of the ALGSA e-news dedicated to and in memory of: Alaina Hahn
Sindrome de Alagille - Espana

¡Cada edición de nuestras noticias electrónicas de ALGS destacará un grupo de apoyo ALGS INCREÍBLE! Queremos llamar la atención a todos los grupos de apoyo en todo el mundo, verlos crecer y ganar más participación. En este momento, nuestros materiales y nuestros boletines no están traducidos. Algo que queremos cambiar Al destacar un tema de cada grupo de apoyo, esperamos pasar lentamente a una organización más diversa que todos puedan disfrutar, a pesar de las barreras del idioma. Todos deberían sentirse bienvenidos en la comunidad de ALGS, independientemente de qué grupos de apoyo o qué idiomas hablen.

"Síndrome de Alagille - España" es un grupo de apoyo de ALGS muy exitoso, con 77 miembros. Son acogedores y siempre tienen los brazos abiertos para sus nuevos miembros. Por favor, considere visitar esta página y preséntese mientras esté allí.

Every issue of our ALGS e-news will highlight one AMAZING ALGS support group! We want to bring attention to all of the support groups around the world, watch them grow and gain more participation. At this time, our materials and our newsletters are not translated. Something we want to change. By highlighting one support group every issue, we hope to transition slowly into a more diverse organization that everyone can enjoy, despite any language barriers. Everyone should feel welcomed into the ALGS community, regardless of which support groups or what languages they speak. 

"Síndrome de Alagille - España" is a very successful ALGS support group, having 77 members. They are welcoming and always have open arms for their new members. Please consider visiting this page and introduce yourself while you are there! 
Sept 1 - Oct 15, 2017

The ALGSA Fight For A Better Life campaign for 2017 recently came to a close, wrapping up with just over $30,000 in proceeds from events and efforts around the world. We couldn't be more thankful for the participation this year. Having 24 teams and 7 individual fundraisers, we were super excited to see all of the buzz around the FIGHT this year! Didn't get to participate? There's still an opportunity! Follow the link to donate to your team of choice and YOU will still have the chance to give a gift to combat the ALGS fight!

Thinking about participating in the 2018 ALGSA Fight For A Better Life? Read below for a FIGHT description and start planning your 2018 fundraising strategy!

ALGSA Fight For A Better Life, formerly known as the annual ALGSA Virtual Walk, is the Alagille Syndrome Alliance’s largest fundraising campaign. It runs for six weeks, from September 1 through October 15 each year. This virtually-based fundraising event branches out to include team and individual fundraising activities at physical locations around the globe. Each year the ALGSA encourages all those affiliated with this rare genetic disease, whether through pharmaceutical companies, organizational partnerships, friends and families of ALGS loved ones in the USA and abroad, or those looking to make a promising impact in a needful community, to consider fundraising for the betterment of services we offer to our community.

The concept is simple. Willing volunteers start a fundraising campaign or team and hold one or more events to collect pledges or donations that contribute to the ALGSA Fight For A Better Life annual fundraising goal. Each fundraiser and their team works toward their own specified goal in fun and creative ways. Past teams have reached and exceeded their Fight goals through BBQ events, soda can collecting, 5K runs, fundraising picnics and gatherings, candy bar sales, yard sales, online auctions, artistic expression parties, and just sharing their FIGHT link on their social media pages with their story. The possibilities are limitless.

No goal is to big or to small. We are here to support EVERY effort and will help anyone looking for ideas. Give us a call here at the ALGSA, we would be happy to share our experiences!
RARE Science, Inc: RARE Bears for kids and adults living with ALGS

Rare Science and ALGSA have joined forces to unite free RARE Bears with ALGS Warriors around the globe! Another gifting is underway with the goal of bringing awareness and hope to children and their families who face the challenges of living with Alagille Syndrome. The RARE Bear Program is a community driven initiative that is supported by the ever-growing RARE Bear Army of volunteers who help make one of a kind bears for special one of a kind kids. Gifted RARE bears have a serial number that represents a child in the RARE Bear Program. The RARE Bear Program, created by RARE Science, involves patient community outreach and the creation of a registry and network of kids who suffer from rare disease worldwide. Data rich registries and networks create critical information banks that lead to the understanding of the common biology of a rare disease; thereby, enabling the identification of potential therapies that could help. The RARE Bear Program is always in need of quilters, stuffers, sewers and contributions to help fund the program and shipping costs of the bears to their new homes. If you are interested in being a part of the RARE Bear Army please reach out or apply for a bear using the link below. Together we can drive research forward for the rare disease community and change the lives of rare children! The goal is to get a RARE Bear into the arms of each and every ALGS Warrior!

Do you have an ALGS school-ager?

by Deanna Power, Director of Outreach, Disability Benefits Help
Knowing when to apply for Social Security disability benefits can be very challenging for people with Alagille syndrome. Because the condition varies wildly between those with the diagnosis, qualifying will vary depending on your own medical history and current symptoms. If you’ve considered applying for disability benefits, here are a few tips on when you should (and shouldn’t) apply.

Don’t Apply If...
...You’re still working, or you can work part time.
The SSA’s “definition of disability” is someone who is unable to earn a gainful living, which is $1,170 per month in 2017. If you’re currently earning more than this and you think you’d like to work a little while longer, you should not apply for benefits, regardless of your current symptoms.
…You’re over your full retirement age.
Your full retirement age is 65-67, depending on your date of birth. At this point, you are no longer eligible for Social Security disability benefits, but you could receive Social Security retirement!
…You’re not seeing a doctor
Medical evidence is the most important factor of any claim. If you’re not currently seeing a doctor, your claim will be denied. Try visiting a low-cost health clinic if you have difficulty receiving affordable treatments. With some medical evidence on your side, you’ll have better odds of approval.
…You’re not taking medications
Along with medical evidence, the SSA will want to see that you’ve attempted to manage your complications via treatments prescribed your doctor. For example, if you’re not taking any medications for liver disease, the SSA may not approve your claim.

Apply With Caution If…
…You don’t have a health insurance alternative
If you’d like to stop working but would not be eligible for health insurance from a spouse or could not afford one of the marketplace health insurance alternatives, you may be in for a tough ride. Most Social Security recipients are eligible for Medicare, but not until a full two years have passed since their condition became disabling. This is usually the point at which someone was unable to work due to Alagille Syndrome, not necessarily the date at which you applied. Regardless, you might be without health insurance for over a year if you do not have assistance from a spouse or another plan available.
…You don’t have any financial savings
Most disability applicants leave their job and then apply. You should never apply while still working and plan on quitting your job once your claim is approved, as your claim will always be denied. It unfortunately often takes well over a year to be approved. In fact, the fastest you could receive payments is five months. Be sure to prepare to lose income for an extended period of time when you apply for Social Security disability benefits.

Apply for Social Security Disability Soon If…
…Your condition worsened
If your condition has suddenly become unbearable, it’s usually a good idea to leave your job and apply immediately. This is also true if your Social Security claim was denied in the past. If you have more medical evidence showing that you’re more ill than before, you’ll have a much higher chance of qualifying.
…You left your job
If you can’t work even part-time, it’s very likely that your condition is severe enough to qualify for Social Security disability benefits. As soon as you stop working, apply for Social Security. It’s important to apply as quickly as possible because your claim will take months to process.
…You’re working part-time and earning less than $1,170 per month
If you’re able to work with your employer to find a situation where you’re earning less than $1,170 per month, you will qualify for Social Security benefits even with a job. This is the ideal situation for most applicants, as you’ll be able to keep your employer’s health insurance if it’s offered. If you do find you’d like to try to return to work, you can even do so without jeopardizing your Social Security benefits. The Ticket to Work Program allows Social Security recipients to attempt to work for up to 9 months (or longer if your work attempt is unsuccessful) without any risk of losing benefits.
Please visit the Disability Benefits Help Blog for more information HERE or email
Deanna Power at
Do you get the Alagille Syndrome Alliance quarterly newsletter mailed right to your front door?
Meet Jude!

Our 2 year old son Jude was born with a congenital heart defect called Tertrology of Fallot, which we were NOT aware of before birth. While recovering from emergency open heart surgery to place a shunt the day he was born, CICU doctors noticed he was looking more and more yellow. When they realized it was not the typical newborn jaundice, they were very concerned. A battery of tests were done to figure out the issue. After an eye test and liver biopsy, Alagille Syndrome was clinically diagnosed. A few months later we received the results of the genetic testing that confirmed it. We were devastated. Life hasn't been easy but we've made it work despite all the obstacles! Jude recently had his second open heart surgery to replace a shunt and he is due for full repair as soon as his pulmonary arteries are bigger. His liver is still considered stable but slowly getting worse. His GI doctor says he will most likely need a transplant in the future. He has a small cyst on his kidney that thankfully hasn't given him any trouble. He is doing well in therapies and meeting milestones! We are taking his journey one day at a time, one symptom at a time. If I can share a nugget of wisdom for new parents of children with Alagille Syndrome, it's to make sure you have a good support system. -Nicole Neal (Mom)

Most people will not understand the struggles we parents go through. You HAVE to find some close friends/family that you can share all the ups and downs with. Look--even Jesus had a small group of guys; Peter, James and John, that he confided the most in. OR if you prefer, EVEN Batman had the Justice League! You must do this too. Your child's journey is not a journey you have to travel alone. Get involved in a church, a support group or something that can help you meet people who will understand, will truly listen, and will encourage you. --Jeremy (Dad)

When our son was born, my husband was a part of a fantasy football league at our church that started right before his birth. While in the hospital after Jude's surgery, he needed someone that He could vent to or even talk about something ELSE during the downtime at the hospital. This group of 10 people knew that, and were there for him each night to chat about Jude, but also help him get his mind off of that chaos all around him. He will always love this group of people for what they did for for during this time. I ALSO had a group of ladies whom I reached out to for encouragement. I can't thank them enough for speaking life into me! Remember to take care of yourself because you cannot pour from an empty cup! This goes for you too Dads (or male caretakers)! My husband is an admin for a mens only Facebook page called The ALGS Mans cave. We have many places for women to get support but we're in dire need of a place for men to share their own feelings and are hoping this will help. I know my husband works so very hard to provide everything he can for his family. If you know a Dad who could use a pick me up or just a "Hey're doing a great job-DO NOT hesitate. Make the phone call...stop in and see if HE needs anything. These guys are just as tired as we are.  I would just like to say thank you to MY children's Daddy and thank you to ALL the ALGS Dads or male caregivers out there! You guys are rocking it!  We will keep bringing awareness, hope and pray that new medications and treatments are found that help alleviate things like the itching, xanthomas and help with weight gain. This isn't an easy road to travel but one look at Jude and we know it is definitely worth it! Being a ALGS parent has taught me NEVER to take ANYTHING for granted and ALWAYS appreciate the victories no matter how small! It has also taught me how to be ok with reaching out to others for help and how important is to BE helped. --Nicole (Mom)

It is also VERY important to incorporate other siblings into the care of the child with ALGS. It's been pretty rough on our daughter Audrie. She was the only child living in the house before Jude's birth and just like her father, loves the spotlight. This has been a difficult change for her as Jude gets much attention because of his issues. It's been tough on our other daughters, Gabi & Zoe, who live out of town. They do not get to see him very much. In our opinion, we as parents must push to have as much time with any other kids in the home as we can. We do feel guilty because of the extra time spent with the one with special needs, this is human nature, but we cannot let that guilt stop us from making a change. Though we might think shielding them from the truth is good for them, all that might do is put a wedge of resentment between them and the one with needs. We try to be honest with Audrie and she understands as much as a 5 year old can. We let her help us and soon will be taking her with us on doctor visits to learn more. She doesn't really understand just yet, but she is going to be one of the most important people in Jude's life. She will have to stand in for us at school and outside the home, so she must know everything that goes along with it, and most importantly, she must feel like she's part of the the team. --Jeremy (Dad)

We all know the struggle that comes from having a child with this disease, but that struggle must not define us nor control us. Our children are a special gift and we must strive to share the story of that gift with others. Jude's journey will not stop with Alagille but will only be a starting point in his testimony that will reach many. -- Nicole & Jeremy ALGS Parents

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Alagille Syndrome Alliance
From Humble Beginnings
The Alagille Syndrome Alliance (ALGSA) is a 501(c)(3) public charity based in Oregon. Our organization was sparked into existence in 1993 by a girl named Alaina Hahn, who was born with a rare genetic disease called Alagille Syndrome (ALGS), and her mother Cindy Luxhoj, who would not quit looking for answers to help her daughter live the best life possible. From that small beginning, we have grown into a thriving organization that serves individuals suffering from ALGS, who we call ALGS Warriors, around the globe. The ALGSA is striving to extend our reach to more families, educate health professionals and participate in research initiatives, and is tirelessly working to build a better life for everyone living with this rare disease. What the future may hold is beyond our power to predict but we have big plans, bright aspirations, and the comfort of knowing there are hundreds of people hoping we succeed.

ALGS affects about 2,000 individuals in the United States and 10,000 people worldwide. It causes most of the major organ systems in the body to malfunction to varying degrees with wide-ranging symptoms, although it tends to have the most severe impact on the liver, heart, lungs, vascular system and bones. ALGS is caused by mutations in two genes – JAG1 (primarily) and NOTCH2 (in a few cases) – on chromosomes 20 and 1, respectively, and is autosomal dominant, meaning one mutated gene in a pair dominates the unmutated gene resulting in disease. ALGS Warriors are born with this rare disease and there is no known cure.

The ALGSA is governed by a volunteer Board of Directors and receives worldwide recognition as a source of current, accurate information about this rare and complex disease. Our organization also includes several expert advisors, a Medical Advisory Board, four standing committees, and paid staff.

We provide a vital link between families and offer them the resources they need to help their children live longer and healthier lives. We also provide financial support for research and are actively involved in encouraging our families to participate in research studies vital to unraveling the mystery of ALGS and identifying new diagnostic tools and treatments.


"Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome."

This is central to everything we do and inspires us to strive for excellence in all facets of our work within our organization and in the wider world.

Our vision is simple – that, as a result of our efforts and in partnership with our stakeholders, all ALGS Warriors thrive in a close-knit community full of loving support, easily accessible resources, and life affirming hope.

The ALGSA is built on a steadfast belief in the formidable power of one person to achieve amazing feats and the equally awesome power of many working together to change the world. Based on this foundation, we strive to achieve several fundamental goals:
  • Support the ALGS community by continuing our innovative efforts that emphasize education, opportunities to connect, access to resources, and individual support.
  • Build capacity to increase engagement in advocacy and research, helping support development of therapies that benefit ALGS Warriors around the globe.
  • Engage medical professionals to broaden knowledge of ALGS, develop guidelines for care, communicate with practitioners, and inform medical students through ALGS education.
  • Offer a symposium every three years for families to access resources that meet their immediate needs and help them thrive.
  • Leverage staff resources and external relationships to stay financially healthy and sustainable.
  • Implement an operational model that allows for growth and continues to encourage flexibility and responsiveness to the needs of our community.
We welcome you to our organization and look forward to an inspirational and mutually beneficial relationship
Consider a donation to the ALGSA today.
Your gift goes toward programs, materials, and events that help educate families, healthcare providers, researchers, and scientists around the world. Together, we are working to FIGHT ALAGILLE SYNDROME and find a cure.
Stay tuned for the next issue of the new Alagille Syndrome Alliance
e-newsletter! Coming December 2017

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