About 4ALS

MLB has teamed up with four leading ALS organizations to raise awareness and funds to fight this deadly disease. Here is where they share their latest stories, research and support.

A few of our 4ALS bloggers include:

Curt Schilling, Retired MLB Pitcher
Curt Schilling is a retired Major League Baseball pitcher who has been one of the leading advocates for people living with ALS and The ALS Association for 17 years. His nonstop fundraising efforts including the longtime fundraiser ?Curt?s Pitch for ALS?, along with testifying before Congress and visiting with legislators during National ALS Advocacy Day and Public Policy Conference in Washington, D.C., have enriched the quality of life of people fighting the disease and their families while expanding awareness about the ravages of ALS. He became involved with The Association in 1992 when he played for the Philadelphia Phillies and was introduced to patient Dick Bergeron. Since then, Schilling and his wife Shonda have worked very closely with The Association?s national network of chapters and along the way have reached out on a personal level to hundreds of people impacted by the disease. The Schillings were inducted into The Association?s Hall of Fame earlier this year for their sustained and dedicated efforts in advocacy, awareness and fundraising.

Noah benShea, Author and National Laureate of The ALS Association
Noah benShea accepted the title of National Laureate of The ALS Association in 2005 for two reasons: He wanted his words to result in the world caring more about finding a cure for Lou Gehrig?s Disease and to provide hope to those living with ALS. An internationally honored poet-philosopher, scholar, and the international best-selling author of 22 books translated into 18 languages, including the ?Jacob the Baker? series, benShea offers an insightful, compassionate perspective on life?s journey that can only emanate from someone who witnessed his own father?s courageous struggle against Lou Gehrig?s Disease. Noah benShea’s inspiring columns about such topics as dealing with life and death, hope, faith, love, character, peace and change, have touched lives and appeared on ?What Matters Most,? his online commentary on The Association?s Web site and in publications, bringing a great sense of comfort to the ALS community.

Lucie Bruijn, Ph.D., Senior Vice President of Research and Development, The ALS Association
Lucie Bruijn, Ph.D., joined The ALS Association in January 2001 and has grown its
scientific research program
into an aggressive global enterprise that is focused on bringing new therapies to people with ALS while pursuing innovative and diverse approaches to finding a cure for the disease. Dr. Bruijn directs a worldwide network of researchers who participate in ALS Association-funded projects. Under Dr. Bruijn?s leadership, The Association launched the groundbreaking research initiative, Translational Research Advancing Therapies for ALS (TREAT ALS), to accelerate clinical testing of compounds with promise for establishing new treatments for the disease. To stimulate increased funding of ALS research and promote advances in knowledge about the disease, Dr. Bruijn encourages collaborative partnerships between funding agencies, biotechnology companies, researchers, academia and private industry in the quest for treatments and a cure. As The Association?s representative on numerous scientific and research committees worldwide, Dr. Bruijn advises scientists, government officials and industry leaders about the latest developments in the field of ALS research. She continues to publish in the field in peer-reviewed journals and is actively engaged in understanding the most recent research developments. Recognized as an authority on ALS, Bruijn is frequently quoted in national newspapers and magazines, has been seen on NBC?s ?Today? and CNN?s ?House Call with Dr. Sanjay Gupta? and heard on the CBS Radio Network.

Steve Perrin, Ph.D., Chief Executive Officer & CSO
Dr. Perrin is an expert in the drug development process and has two decades of experience in leading preclinical and translational research efforts. Since coming to ALS TDI in 2007, Dr. Perrin has added new capabilities to the Institute?s drug development pipeline, which now includes small molecules, gene therapy, protein biologics and stem cell projects. This multi-faceted approach is designed to meet the unmet medical need posed by ALS by considering an array of therapeutic options in a centralized manner at the Institute?s high-tech research facility in Cambridge, Massachusetts.

John McCarty, Ph.D., Director, Therapeutic Investigation
John?s role at ALS TDI is multifaceted, in that he is both an important member of the outreach facing team as well as a participant in the research process. Prior to coming to ALS TDI in 2005, Dr. McCarty, an expert in cell biology, held a variety of positions at biotechs and research institutes all over the world. However, today John uses that knowledge and experience in his role as moderator of the busy online discussion boards at The ALS Forum, to lead online webinars and webcasts on the biology and history of disease research, and travel the country giving informational seminars to hundreds of patients a year as part of the Institute?s ALS Research 101 seminar.

Nancy O?Dell
Longtime host of the entertainment-news show “Access Hollywood” and author of the book “Full of Life,” Nancy O’Dell serves as MDA National ALS Ambassador. O’Dell raises awareness of MDA’s fight against ALS through media interviews, public appearances and public service announcements. In June 2008, ALS claimed the life of O’Dell’s mother, Betty Humphries, who was 74. O’Dell joined MDA’s effort to spur ALS research after her mother learned she had ALS in November 2007. This Labor Day weekend, O’Dell will return for a second year as a co-host on the Jerry Lewis MDA Telethon. She also serves as an MDA national vice president.

Augie Nieto
Augie Nieto, 51, of Corona del Mar, Calif., is the founder and chief inspiration officer of MDA’s Augie’s Quest, a cure-driven ALS fundraising initiative. He and his wife, Lynne, also serve as co-chairs of MDA’s ALS Division. In addition, Augie is an MDA national vice president. Nieto, a pioneer in the fitness equipment industry, learned he has ALS in March 2005. When launching MDA’s Augie’s Quest, the Nietos set an ambitious goal of raising $18 million for research in three years. They met that goal, with the money raised being invested in laboratory research that each day comes closer to defeating ALS. Their efforts have now surpassed $19 million and their work continues.

Sharon Hesterlee, Ph.D. — MVP Senior Vice President and Executive Director
Dr. Hesterlee joined the Muscular Dystrophy Association in 1998. In her most recent position as Vice President for Translational Research at MDA, she developed and oversaw MDA?s Translational Research Program, designed to overcome barriers to drug development for neuromuscular diseases. During the four years of the program, she brokered seven milestone-driven contracts with industry, totaling over $26.7 million, with companies like Asklepios Biopharmaceuticals, Repligen, Insmed, PTC Therapeutics, the ALS Therapy Development Institute and California Stem Cell. In addition to her work on translational research, Dr. Hesterlee served for six years on the Federal Advisory Committee for muscular dystrophy and has been the main liaison for collaborations with other organizations in the areas of Duchenne muscular dystrophy, spinal muscular atrophy, Friedreich?s ataxia, congenital muscular dystrophy and ALS. She received her Ph.D. in neuroscience from the University of Arizona in 1999, where she studied neural development and was selected to participate in the Marine Biological Laboratories 1997 course in embryology. She also benefited from a Flinn Foundation departmental training grant. Dr. Hesterlee played a key role in the formation of MVP and serves as its top executive.

Valerie and Meredith Estess

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