Select Page

The Power of One Patient

The Alport Family Meetings (now know as Alport Connect Together events or ACTS) provide a unique opportunity for members of our renal community to meet and mingle with other families affected by Alport syndrome and simultaneously learn from the experts. Shannon and her husband attended our Los Angeles event (AFMLA) along with their son, Arturo, who participated in the Teen/Young Adult program headed by Kevin and Ryan. Shannon, Arturo and Kevin share their AFMLA experiences and encourage others to join the upcoming meetings!

Most everything I previously knew about Alport syndrome came from Dr. Google. It’s how I found out about the Alport syndrome Foundation and subsequently about the Family Meetings. The closest meeting (Los Angeles, California) was three hours south of us and I knew my son, husband and I had to go. I really feel it was one of the best decisions we made in becoming the best advocates for our care. I learned much more than Dr. Google could ever tell me. Instead, I had real life experts in front of me answering the questions I may or may not have asked before, and this time I was receiving real and honest answers.

My 16-year-old son Arturo met kids like him in the Teen/YA program…kids that understand the challenges and the emotions that come with a fear of not knowing what may come. He metย ย  other individuals who have faced those same challenges and have shown Alport syndrome who is in charge! I met mothers and fathers who share my worry for our children.

To anyone thinking about attending an upcoming Family Meeting โ€“ do it! Meeting experts in the field of Alport syndrome is an opportunity few and far between. Seize this time to ask the questions that leave your doctor stumped. The best part of the weekend though was being in a room with people who feel the same way you do and understand what is going on with your health. However, to walk away with a support system of your own and to have your child walk away with a support system of their peers is worth the trip alone.


I realized there are people just like me out in the world willing to travel to far places just to meet others like them and to not feel alone. Talking to these people was interesting whether it was learning what they do for a living, or where they were traveling from to go to the Family Meeting.

There were activities planned for the Youth Group and they were fun, but also we learned stuff from them too. We played bingo learning foods that are high in potassium. We met with specialists, learned about Alport syndrome and met the Los Angeles research team that is trying to find a cure for us. It was all really interesting.ย I am excited to go again, and hopefully see the same people and meet new people, too.

At the conclusion of our Los Angeles Alport Family Meeting, Ryan and I asked our Young Adults to share their single greatest takeaway from the weekend. After listening to their responses, I realized my takeaway wasn’t some shocking revelation but rather an affirmation of something I’ve discovered in my four years since being diagnosed with Alport syndrome: Never underestimate the power one patient can have on the life of another.

As I watched one member of our youth track share about their hearing loss with another member facing the same issue, I couldn’t help but think how crazy everything seemed upon my first diagnosis…that is until I had that first experience speaking with another individual affected by Alport syndrome. Kidney transplantation was likewise frightening until I first spoke with, and became educated by, a fellow 20-something with Alport syndrome who experienced organ donation firsthand.

AFMLA brought together strangers, forged friendships and provided education to empower those in our community. AMFLA fostered many of these first-time experiences between those seeking a sense of normalcy amidst what can initially seem like healthcare chaos. That sense of belonging…of comfort… is just as crucial to the mind, as diet, exercise and medicine are for the kidneys. Come join us in St. Louis and/or Hackensack and get comfortable.

Click here for more information on our upcoming Family Meetings..


Additional Resources:
Video from the Los Angeles Alport Family Meeting
Video made by the Teens/Young Adults in LA
Pictures from AFMLA on Flickr
Our previous blog article where Lisa talks about the impact of the AFMLA on her family