All month, we are featuring stories of individuals who are having an impact in the fight against ALS.
Meet Suzy Shealy from Columbia, S.C. Suzy is a wife, Gold Star mother (son Army Sgt. Joseph Derrick), grandmother, sister, person living with ALS and a tireless ALS advocate. We recently sat down with Suzy to get to know her and learn how ALS impacts her life.
Continue reading Every Mother: Meet Suzy
Last week, Dr. Brian Wainger of Massachusetts General Hospital and Stephen Winthrop, Chairman of The ALS Association Board of Trustees, gave their unique clinical trial perspectives during the Northeast ALS Consortium (NEALS) webinar titled, “Retigabine Clinical Trial Update & Discussion with ALS Patient Advocate Stephen Winthrop.” For many years, The ALS Association has proudly partnered with NEALS to run ALS centered webinars to disseminate the most up-to-date information to the ALS community. Today’s post discusses the actively enrolling Retigabine clinical trial, which The ALS Association funds, as well as an honest perspective on what it is like to participate in ALS clinical trials.
Continue reading A Patient Advocate and Doctor’s Perspective on Clinical Trials: Update on the Retigabine Phase II Trial
Over the last several months, The ALS Association has worked on developing and implementing new educational tools to meet the needs and requests of our community. We are pleased to announce and highlight two of our newest projects – our resource guide series translated into Spanish and the Key Medical Information App – which are now available.
Continue reading Announcing New Care Services Educational Materials: Spanish Resource Guides & Key Medical Information App
Major League Baseball today announced its support of The ALS Association’s ALS Home Health Initiative by launching the MLB Fights ALS campaign, a league-wide fundraising effort set for August 1st-5th. The campaign will be promoted in ballparks and by MLB’s media assets, including MLB.com, the Club websites and MLB Network, as well as via YouCaring.com. Beginning with an initial $50,000 contribution from Major League Baseball, the effort will seek to generate additional funds for the Home Health Initiative’s mission of providing in-home care to individuals and families affected by Lou Gehrig’s Disease.
Continue reading Major League Baseball Partners with ALS Association to Launch “MLB Fights ALS” Campaign
Today, we sit down with Stephen Winthrop, our newly elected Chair of The ALS Association Board of Trustees to hear his thoughts on the fight against ALS and the role of The ALS Association in that fight. Stephen first joined the Association as a Trustee in 2015. He brings his expertise in fundraising, financial management, grant writing and information management services for non-profit organizations gained from a career in management consulting. He was diagnosed with ALS in November 2013 and immediately focused his energy on the fight against ALS. We are proud to be led by such a great leader and tireless ALS advocate.
Continue reading Q & A with Stephen Winthrop, Chair, ALS Association National Board of Trustees
By Joanne Mattingly and Shannon Kennedy
My name is Joanne. I am 74 years old and was diagnosed with ALS September 2016.
My mother, Dorothy, had ALS and died in 1986.
As I navigated my illness, I reflected on my relationship with my mom when she was going through this. I remembered that I spent time with her, but we did not talk about her internal world. She was a kind and loving person but was not comfortable sharing her feelings.
I, being of another different generation, quickly found out that this illness encourages me to grow internally and share who I am with my family and friends. Their visits, calls and cards raise me up.
Continue reading Showing Up – A Mother Daughter Journey Through ALS
This year, Jennifer Beckerman received the 2017 Tom Watson Award For Courage from The ALS Association Mid-America Chapter at their annual Night of Hope. Hear Jennifer’s story and how her beautiful, 16 year old daughter, Savannah, is her ultimate support.
Continue reading Mother Daughter Team – Jennifer and Savannah Beckerman Fight ALS Together