Every May, The ALS Association joins the ALS community in celebrating ALS Awareness Month, a time to bring attention and understanding to this disease. As part of this year’s Awareness Month, we are happy to be launching the ALS Association Blog!
We know that people living with ALS – including family members, caregivers, and friends – form a tight-knit community. Because of this, we want to make our blog a place for you to share your stories and talk with each other. Posts will include stories and creative works submitted by people in the ALS community, and visitors to the blog will be able to leave comments and share their favorite articles on social media.
The blog will also be a place to find the latest news, information, and issues related to ALS, and will offer a look at the progress of The Association’s initiatives in research, advocacy, and care services. Continue reading Introducing The ALS Association Blog!
In 2014, The ALS Association Golden West Chapter and patient advocate Jim Barber partnered to build the Neuro Collaborative concept. That year, following the amazing outpouring of support from the ALS Ice Bucket Challenge, The ALS Association committed $5 million dollars to the project. With additional help from The ALS Association Orange County and Wisconsin Chapters, the Neuro Collaborative has become an engine for ALS therapeutics. Learn more about the progress of each partner in the Neuro Collaborative below.
Early development of potential therapeutics is a major bottleneck in ALS therapy development. Eliminating this bottleneck is a significant opportunity for accelerating new treatments. That’s where the Neuro Collaborative comes in.
The Neuro Collaborative is a partnership between three leading laboratories in California: Clive Svendsen, Ph.D. at Cedars Sinai in Los Angeles; Steven Finkbeiner, M.D., Ph.D. at Gladstone Institutes, affiliated with University of California San Francisco; and Don Cleveland, Ph.D. at University of California San Diego.
The goal of the Collaborative is to establish and invest in a leading team of experts to efficiently advance ALS drug development together with industry partners. This complements other programs including the Drug Development Contract Program in the TREAT™ ALS portfolio investing in academic and industry partnerships. This synergetic model leverages open dialogue and the scientific expertise of leading researchers to achieve therapeutic milestones as quickly as possible. It also reduces risk in the drug discovery process and attracts pharmaceutical companies to invest in drug development and clinical trials for ALS. With success, potential therapies for ALS will move more quickly than ever toward FDA approval and the open market. Continue reading The Neuro Collaborative: An Engine for ALS Therapeutics
“Our ability to make progress in ALS depends so much on attracting the best young scientists into the field. The ALS Association’s Milton Safenowitz Post-Doctoral Fellowship program is a critical part of that effort. Almost 90 percent of our Fellows stay in ALS research, making up a significant fraction of the younger generation of ALS researchers.”
– Dr. Lucie Bruijn, Ph.D., M.B.A., Chief Scientist, The ALS Association
Javier Jara, Ph.D., is a Research Assistant Professor in Dr. Hande Ozdinler’s laboratory in the Department of Neurology at the Northwestern University Feinberg School of Medicine in Chicago. He was funded by The ALS Association’s Milton Safenowitz Post-Doctoral Fellowship for ALS Research from 2010-2012 and recently was awarded his own Investigator-Initiated grant by The Association. These awards helped support his research including a project that focuses on how upper motor neurons die in ALS and how to intervene to prevent their death. The results of this project were featured in the January 21, 2016, issue of Gene Therapy. Recently, we sat down with Dr. Jara to learn more about his exciting research project and to get to know the person behind the science.
What has the support from The ALS Association meant to you? Do you have a message for donors who helped make your projects possible?
I want to give a big thank you to the donors for their support and trust. Without their generous contribution, I would not be where I am now. I am extremely grateful! Continue reading Researcher Spotlight: Dr. Javier Jara
Barbara Dickinson, whose husband, Brian, lived with ALS for nine years, shared her thoughts and feelings about having a loved one with ALS. Barbara is a former national trustee of The ALS Association and president emeritus of The ALS Association’s Rhode Island Chapter. Our thanks and gratitude go to Barbara for agreeing to let us put her words on our web site.
The ALS Association’s goal in sharing this information here is, through Barbara’s story to 1) show how one family was able to successfully negotiate with their HMO for in-home care payments, and 2) share experiences of caregiving and effective coping strategies – validation of common feelings.
It should be emphasized that this tells the experiences of one individual at a certain time in her life. Certainly, not all people will have the same situations and experiences that Barbara shares and not everyone will and/or would develop the same opinions that Barbara has.
Excerpts from Barbara Dickinson’s messages
“My name is Barbara Dickinson. I’m the trustee of The ALS Association Rhode Island Chapter and also a national trustee of The ALS Association. I got involved with ALS because my husband was diagnosed nine years ago with the disease. We made some decisions in the course of his disease that has allowed him to have a quality of life that I would hope more patients with ALS would be able to achieve, and that’s what I want to talk to you about today. Continue reading From One Caregiver to Another