José Cofiño - member of a loving family, friend, classmate and colleague living with ALS
Beyond ALS means seeing people with amyotrophic lateral sclerosis (ALS) as being much more than the disease, as well as having us focus on a time when research will find a solution for Lou Gehrig's Disease. My journey is not mine alone. My partner, Ben Trust, is by my side every step - one at a time. So, too, are my family and friends. Please join us!
100% of donations through this site go to directly to research at the ALS Therapy Development Institute (ALS-TDI) in Cambridge, Mass.
José, Ben and Friends Go Beyond ALS - Blog
All my life, hard work and perseverance paid off. If I put my mind to something it would eventually happen. The path was filled with bumps and detours, but I reached my goals all the same. I've been approaching ALS with the same conviction. I share my struggle, not for pity, but to encourage you to live your best life.
I saw the first Ice Bucket Challenge on Facebook only days after my husband, Jon Ferraiolo, was diagnosed with ALS. My husband jokingly said of the attention on ALS, “How nice for everyone to be doing this for me.” He is the same positive, caring guy with a brilliant mind, only now his body is failing him.
What does it feel like to watch your companion slowly suffer the effect of ALS? What does it feel like to have the financial ax hang over you as you come out of shock and try to figure out how to support all of this? Its not easy.
This year’s annual Tradition of Hope Gala, which was held Saturday evening at The Beverly Hilton, raised over $900,000 for Amyotrophic Lateral Sclerosis (ALS) research.
I was recently filling out some forms at the Doctor's office. I came to the part of the form, where I had to check marital status. I became frozen: There was the big flashing "widowed." I am too young for this widowed life. I think of widowed as older, way older than 52, and having lived of life of accomplishments.
It was an honor to participate in the Augie's Quest Traditions of Hope Gala...
What is Beyond ALS?
Beyond ALS is dedicated to helping increase awareness for ALS: a deadly disease with no known cause, no treatment and no cure; and to raise funds for ALS Therapy Development Institute, a leading research institution in the fight against Lou Gehrig's Disease. 100% of donations through this site go to research at the Institute.
Please Share Your Thoughts and Comments
Living with ALS is a journey of innumerable ups and downs. You have come to BeyondALS because you, in some way, have been touched by Lou Gehrig's Disease: as a PALS, caregiver, family member, or friend. Sharing your own experiences and thoughts will help others, as we all deal with the realites of living with ALS and with life after it has taken a dear one.
We offer this space as an opportunity to share, celebrate, rant and grieve. At its heart, this is YOUR page to help us all go Beyond ALS.
Share Here: ALS Thoughts and Comments