In celebration of Amyloidosis Awareness Month, we are excited to share our FACES of Amyloidosis 2023.
Each person in this video is affected by amyloidosis. Wanting to put a face with this disease, they also want you to know they embrace the challenge and fight for living life.
Amyloidosis is a rare and incurable disease, affecting people in different ways. It’s complexity and nature of symptoms often delays the time to diagnosis, during which the disease continues to advance. Timely diagnosis impacts the trajectory of survival and today is arguably the biggest challenge patients face, especially with more and more effective treatments available.
A huge thank you to the many that participated, for they are the true warriors.
The push to raise awareness is intensifying.
The fight to find a cure is ON.
A special thank you to Andra Day. Her song “Rise Up” and amazing voice brought these FACES to life.
Thank you for putting this together and helping so spread awareness on this disease. ♥️
Susan Dianne Rushton says
Crying my eyes out seeing all the folks I share this horrid disease with. I am the first Susan in the photos. Thank you all for introducing faces and hearts to life that I share this with. Humbled to be among the living. Grateful that someone cares.
Lucinda Barry says
Thank you for sharing our story. I’m so tired today but hopeful that we are heard by this beautiful story.
Melissa Dinolfo, PharmD, BCOP says
Having seen the first “Faces” video several years ago, I’d like to congratulate MM on including so many more survivors (a testament to the work of your Foundation) as well as the educational value of the video. God bless all patients and families impacted by Amyloidosis and provide them with wonderful healthcare, prompt diagnosis, help, healing, and HOPE.
Sue Flanagan says
Thank you for making this beautiful video! I cried when i watched this. Sadly, I lost my husband, my soul mate my best friend to this ugly disease! We begged for answers and NOT ONE doctor could help my Jim. Why? Because none of them knew what Jim was fighting. I pray they continue to search for a treatment/cure! So, no other family hurts the way ours has! Our hearts are shattered !!
Dr Suzanne Lentzsch says
So beautiful, so many faces, so many lives, children and grandchildren!
Evelyn Hoult says
Thank you for making this video and spreading awareness. Too many good people taken way too soon, including my soulmate Gene – my North Star. Please find a cure for this horrible disease.
Michelle Owens says
Thank you for continuing to show the faces of amyloidosis. I was on one of the earlier faces…it definitely helps us to have our faces out there. I can thank God, that because of this and my amazing oncologist, I’m in REMISSION -!heading into my second year! Please hang on and fight as hard as you can. You are loved. And for those who have lost loves ones, I’m so sorry…I’ll keep fighting for you and yours.
Monique Fournier says
Thank you for making and sharing this video! It brought me to tears to see how many other people have this disease and to think about all the people that lost their lives due to delayed diagnosis. Thank you for helping to make others aware.
Thank you for this! It’s so encouraging to know I’m not alone in this journey. I’m the Dawn at the 4:07 point.
Denice Good says
“Amy”, as our family has named this hidden disease, joined our family January 2021 when the diagnosis was finally made. It only took 5 months!! My husband is the first Dan in the video. Seeing all these faces saddens me but also gives me great hope that progress is being made. Dan has been in remission for over a year. Praying he remains that way. Thank you for bringing the disease to light for all to see and showing all the encouraging faces of “Amy” warriors!!
Thank you, Deb, Mackenzie, & all for sharing these powerful photos.
We cried watching this video. So many people fighting this horrible disease. We fight together!!!
Leslie Stern says
This is the most beautiful and inspiring video. Thank you for making
everyone aware of this dreaded disease and hopefully with all the
research it will one day be eliminated.
Denise Winder says
Thank you so much for including my husband, Tim, in the video. We just returned home from a routine visit at Vanderbilt and his bloodwork still looks good. I am so, so thankful for your efforts in raising awareness. Had Tim been diagnosed when he started having problems seven years ago, things wouldn’t have got as bad as they did.
Tina Pfahler says
I’m the “Tina” on this video. I’m so proud to be included and so happy to be here! This is my 10 year Anniversary since my stem cell transplant at the Cleveland Clinic. This disease doesn’t stand a chance with all the WARRIORS fighting for a cure.
Woody Waga says
Thanks for the awareness
I identify with anyone living with an incurable medical condition.
Please keep your head up tall and never accept pity or sympathy
I know from whence I speak
I was diagnosed with Parkinson’s over 14 years ago
Alicia O’Bomsawin says
Thank you so much for continuing to be a voice of awareness for this disease. After watching my husband, John, be misdiagnosed for over a year and then passing away after 6 months from diagnosis, I try to do what I can to raise awareness. Over the past 7 years since he passed, I feel the word Amyloidosis is out there more than before. I hope this continues so no family goes through what mine and many others have gone through. Thank you again for putting this together and letting me be a part of it.
Mark S. Moore, ChFC says
Powerful! Beautiful! Hopeful! Moving! And terrible something like this exists. Celebrate those that fight this battle so one day this too will be wiped from the earth. I vow to pay their efforts forward.
Thank you for sharing JTH. Love ya! = )
QunBin Xiong says
Indeed this is a powerful, touching, moving, and inspiring compilation of warriors fighting journeys for themselves and their families! As an AL patient, this journey has changed me in many ways, and I have connected with many of you and been inspired by your fighting spirits. I just attended a webinar last week, and I must say the future is bright, and the progress in treating Amyloidosis continues to accelerate! So Fight on, Amy Warriors!
Junji Tatsuno says
Early awareness and detection was (is) everything. Glad to see our high school buddy Casey (02:00) still doing well. He’s come a LONG way.since 2012 when he came across the Amyloidosis Support Group website. That website has become the definitive source of Amyloidosis information and what steered him to go to Mayo Clinic Rochester, Minnesota back in 2012.