Everyone affected by ALS is unique, and they all have their own story to tell. Behind the INK provides a place for members of the community to share their story and what inspired them to get #INKEDforALS.
Share your storyDan’s story
Family member/caregiver
Dan White befriended Phil Green years ago when they bonded over their love of sports.
When Phil, a husband and father to 4 children, was diagnosed with ALS in 2018, he decided he was going to dedicate his life to advocating for other people and families affected by the disease. Over the last 3 years, Phil has been actively supporting many other people with ALS and their caregivers throughout their journeys, hoping to make as big a difference as he can, while he can.
Phil has had a lasting impact on many touched by ALS, even those with no connection to ALS until they met him, like Dan. When Phil and others in the ALS community began to participate in #INKEDforALS, Dan took it to the next level and tattooed the symbol on his arm—for life.
Reflecting on the decision he made 1 year ago, Dan shared, “I wanted to see the symbol every day because even if I felt I was having a bad day, I could look down and remember that my day is not so bad. My friend has been dealt a much worse hand in life, and he’s making the most out of it. The world needs to know that people as strong as Phil exist.”
Read other Behind the INK stories
Thank you for submitting your story
All submissions are reviewed by the Amylyx team before posting to the website. We hope to have your story posted in the coming weeks.
April's story
Advocate
I got #INKEDforALS because
we need to #endALS and I am hoping doing this will help bring awareness and support to the cause.
Kimberly's story
Caregiver/family member
I got #INKEDforALS because
My husband passed away from ALS at 52 years old, a little over a year ago. He passed a little less then 3 years after he was diagnosed, and it was a journey no one should have to take.
Sarah's story
Caregiver/family member
I got #INKEDforALS because
My dad died from ALS in 2005. The thought of potentially having the genes for this disease terrifies me. I hope one day soon that a diagnosis of ALS will no longer be a death sentence, but merely a hiccup to overcome.
Jennifer's story
Healthcare provider
I got #INKEDforALS because
our team shares in your passion & drive to bring awareness. As much as it is hard to give the diagnosis, we know that our compassion & guidance for families is helpful in their time of need. Dr Buczyner (in pink) & team
Mollie’s story
Family member/ Caregiver
I got #INKEDforALS because
my family is affected by this awful disease. I now work to bring hope to families like mine, who have lost people to ALS, currently live with ALS, and know that more families will have the diagnosis in the future.
Joe’s story
Family member/ Caregiver
I got #INKEDforALS because
my beautiful mother, Betty, was diagnosed with ALS in 2014. Mom fought ALS with super-human levels of courage, strength & faith until the Lord called her Home. While Mom’s fight is over, our family will never stop fighting.
Heather’s story
Family member/ Caregiver
I got #INKEDforALS because
bringing awareness to what PLWALS endure matters greatly. ALS affects the entire family. These caregivers are true heroes to their loved one as they courageously battle this insidious disease with dignity and grace.
Ekaterina's story
Other
I got #INKEDforALS because
I got inked because I am strong believer in humanity. I also believe that different people can stand together and fightback. I knew two person who suffered and died from ALS at relatively young ages.
Kathleen’s story
Family member/ Caregiver
I got #INKEDforALS because
my sister, Monica Anne Higgins battled ALS with dignity, grace and on her own terms – the way she lived her magnificent life. We continue her fight against ALS through advocacy and getting #INKEDforALS #prancingwithapurpose
Martha's story
Caregiver/family member
I got #INKEDforALS because
My husband was diagnosed with ALS three years after we were married. ALS needs to be cured!