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Patient Insights: Impact on a Family

Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights.

Have a listen to this brief clip from Darlene with thoughts on how this disease has impacted her family.

Expert Insights: Role of Interdisciplinary Care Teams for Amyloidosis Patients

Dr. Melissa Lyle from the Mayo Clinic offers insights into the importance of having an interdisciplinary care team across sub-specialties for amyloidosis patients. Diagnosing and treating complex diseases, such as amyloidosis, elevates the importance of alliances within the patient care team.

Expert Insights: Mastering the Art of Patient Care

Based on all the lessons she learned, coupled with the wisdom from her mentors, Dr. Michelle Kittleson from Cedars-Sinai shares a summary of her published book “Mastering the Art of Patient Care.” She reveals her tips, tricks and pearls of wisdom for caring for yourself and patients. A definite must read for those pursuing a medical career.

Comfort & Connection

Messages of comfort came flooding in, phone calls, friends and neighbours asking, “How can we help? What can we do?” This love and support are what got my family and me through one of the most challenging times of our lives.

In 2016 I was diagnosed with a rare blood disorder called AL Amyloidosis and given a fairly bleak outlook. Instead of planning my son’s first birthday party, I was researching a disease I had never heard of, searching for answers I hoped would save my life.

My best chance for survival was a clinical trial combined with chemotherapy. (long story short, after a long battle, here I am, sharing my story with you.)

I would not have gotten through this terrifying time without the fantastic support system I had. There were big gestures like my parents moving in to care for our two young children and my dad driving me 4 + hours every week to receive my life-saving medicine.

But there were also a million acts of kindness. Neighbours dropping in with dinner, walking the dog or taking the kids to the park. Messages of support, cards in the mail, inspiring notes, and so many amazing people reaching out to say, “I love you. I am here.”

When someone is suffering, we often feel helpless.  

Have you ever been in a situation like this? When a loved one is in pain, and you don’t know how to show up?

There is no perfect way. Just do it. Over and over again, with small gestures that show you care. Comfort, connection, and just knowing you aren’t alone goes so far.

We are hard-wired to need people, companionship, connection and comfort. In hard times, but also to share in our joy, wins, and celebrations.

It is easier than ever to stay in touch with loved ones, yet loneliness is on the rise (Even before the pandemic). In a Cigna[i]study, 47% of Americans reported feeling lonely.

Jen Marr, author of Paws to Comfort and an expert on human connection, points out, “Loneliness is not about being alone. Loneliness is feeling like no one cares.” It’s more about relationships than physical presence. Real comfort means showing up. It’s consistent, little acts that show you care.

Bring Comfort & Care into Your World

In a lovely chat I had with Jen, she points out that we can learn the skill of comfort. We can gain confidence in how to show up for our loved ones when they need us most.

  • Making a substantial effort to find connection and support is essential to make it through times of stress. It might look a little different right now, but phone calls, text messages, video chats, and other creative ways of connecting are essential.


  • Push through the awkwardness and put yourself out there. It doesn’t have to be a perfect grand gesture. Just do one little thing. And then keep doing it, over and over again.


  • Comfort is an action – it’s a million little things. Jen suggests looking at it like marbles in a jar. The more marbles you put in someone’s jar, the deeper the connection will be.


Comfort and connection are ultimately what our world so desperately needs right now. (To push through COVID and beyond!) We need to focus less on our differences and more on what we do have in common – we are all just a bunch of imperfect people struggling to get through this, trying our best every day to make the right choices. And we need to lean on each other to do it. We have the power to make this world a much more beautiful place. And it all starts with a connection.

Thank you so much, Jen, for taking the time to speak with me! You are a fountain of knowledge. Your perspective and kindness are truly contagious.


Lori Grover is a guest writer for Mackenzie’s Mission. She was diagnosed with AL Amyloidosis in 2016 and writes to share experiences and lessons learned during her journey.  More wonderful blogs by Lori can be found on her page Amyloid Assassin.  Lori is a freelance copywriter, and a mom of two wonderful boys. She loves writing, reading, and all things crafty. 


Jen Marr, co-founder and CEO of Inspiring Comfort and author of Paws to Comfort: An Everyday Guide to Learning How You Can Help Mend Our Disconnected World.  Inspiring Comfort, the pioneer of comfort as a teachable skill, is a social good company founded on the belief that today’s increasingly isolated, socially disconnected and hurting world demands that we do a better job caring for one another.

Jen spent over 5 years in crisis response settings such as the aftermath of Sandy Hook Elementary and the Boston Marathon Bombing, with beautiful golden retrievers trained to be a comforting presence for those in need.

It seemed there was a shift in the world, and many people didn’t know how to comfort those around them. They didn’t know what to do, so they did nothing at all.

In response to this need, Jen began the program Club Comfort, which aimed to bring together those who faced trauma and ensure they felt cared for.

The demand was so great, and the program such a success that it quickly grew into Inspiring Comfort (workshops and DIY programs that teach the art of comfort) and led to the book, Paws to Comfort: An Everyday Guide to Learning How You Can Help Mend Our Disconnected World. 

In Jen’s words, “We all have too much to lose if we don’t find ways to care for each other. The alternative is a lonely and hurting world. And we can’t have that.”





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