Mom's Story, A Child Learns About MS

Mom's Story, A Child Learns About MS
Available on Amazon and www.marynickum.com
Showing posts with label progress. Show all posts
Showing posts with label progress. Show all posts

Sunday, April 24, 2022

We Have Come So Far

When Sylvia Lawry started the MS movement in 1946 with the founding of the National MS Society, research into multiple sclerosis was almost non-existent. The disease took years to diagnose, and there were no therapies proven to slow the course of MS.

Things have changed. Decades of research into MS and the basic workings of the immune and nervous systems have built a critical platform of knowledge now serving as a springboard for progress. The Society’s $1.06 billion research investment has fueled many of these advances, and today’s picture looks different for many:

  • There are therapies specifically approved for treating and managing MS, and more potential MS therapies in development today than at any other time in history.

  • MS is more quickly diagnosed, enabling early and sustained therapy to slow disease activity

  • There is much greater awareness of the many symptoms of MS and ways to address them to improve quality of life

  • Scientists are making breakthroughs in identifying risk factors that can increase a person’s susceptibility to MS, which will help lead to ways to prevent the disease.

We have made progress but more must be done for those living with forms of progressive MS for which there are limited treatment options.  The hope – and potential - for new, more effective treatments for MS has never been greater. We are part of a global movement of millions of people working toward a world free of MS.

Critical Milestones

1981 - First MRI pictures of a brain affected by MS are produced, revolutionizing MS diagnosis
1984 - First modern documentation of cognitive problems in MS
1988 - First demonstration, using MRI, of significant lesion activity in MS, even when the disease seems quiet
1993 - First disease-modifying therapy for relapsing MS approved
1996 - First proof that aerobic exercise improves physical and psychological well-being in MS
1999 - Society grantees first to isolate immature cells in the adult brain capable of developing into replacements for myelin-making cells destroyed by MS
2003 - Italian researchers transplant cells to enhance nerve tissue repair in mice with MS
2004 - Pivotal study by Society Fellow shows that African-Americans tend to have a more aggressive course of MS than Caucasians
2005, 2010, 2018 - “McDonald Criteria” for diagnosing MS updated by Society Task Force, speeding time to diagnosis for many
2007 - With support from Society to International MS Genetics Consortium, two genes are confirmed to be linked to MS risk; many more uncovered since
2007 - First large-scale trial of sex hormone estriol gets underway in women with MS, a result of the Society’s targeting of gender differences
2010 - First oral disease-modifying therapy approved for relapsing MS
2012 - Launch of Progressive MS Alliance to speed the development of therapies
2013 - Studies hint that exercise and rehabilitation can improve many functions and even help rewire the brain
2014 - First large, phase 2 clinical trials of myelin repair strategy for MS are launched
2015 - A phase 2 clinical trial co-funded by the Society suggests a pill used to treat epilepsy (phenytoin) has the potential to slow the accumulation of disability in people with MS
2015 - Results of phase 2 trial of anti-LINGO suggests it has potential as myelin repair strategy 
2015 - Society co-hosts international conference on cell-based therapies to forge next steps for cell therapy in MS
2015 - Society funding helps launch MS Microbiome Consortium to promote research on role of gut bacteria in MS progression and treatment
2015-16 - Two large-scale clinical trials break through long-standing barrier by showing benefit in primary progressive and secondary progressive MS
2016 - Positive results announces from two studies of bone marrow-derived stem cells (HSCT) in people with aggressive, relapsing MS; more research focuses on who might benefit and how to reduce risks
2016 - Society-funded International Consortium of MS Genetics identifies 200 genetic variations linked to MS, offering new leads to how genes and other factors that make people susceptible to developing MS
2016 - Society launches two new studies testing the ability of dietary approaches to treat MS symptoms and improve quality of life  
2016-17 - International Progressive MS Alliance awards three large-scale Collaborative Network Awards to promote solutions for people with progressive MS
2017 - FDA approves Ocrevus (ocrelizumab) as first disease-modifying therapy for primary progressive MS, and also as a therapy for relapsing MS
2017 - International team co-sponsored by the Society revised MS diagnostic criteria to speed diagnostic process and reduce incidence of misdiagnosis
2018 - FDA approves expansion of the use of Gilenya to include children and adolescents 10 years of age or older with relapsing MS, the first therapy specifically approved to treat pediatric MS
2018 - A Phase 2 trial showed that ibudilast could reduce brain atrophy in progressive MS. The trial was funded collaboratively by the National MS Society, the NINDS, its NeuroNext trials network, with support by MediciNova, the supplier of ibudilast 
2018-19 - Results announced from several studies of bone marrow-derived stem cells in people with aggressive, relapsing MS. More research is focused on who might benefit and how to reduce risks
2019 - Study sponsored by the National MS Society conducted by leading experts estimates that nearly 1 million adults are living with MS in the United States. This is more than twice the previously reported number
2019 - FDA approves oral Mavenclad (cladribine) for adults with relapsing forms of MS, and also approves oral Mayzent (siponimod) for adults with clinically isolated syndrome (an initial neurological episode) and relapsing forms of MS
2019 - FDA approved Vumerity™ (diroximel fumarate, Biogen and Alkermes plc) for relapsing MS
2020 - National MS Society releases recommendations for aHSCT-bone marrow transplant for MS
2020 - FDA approves generic form of Tecfidera for relapsing MS
2020 - FDA approves Kesimpta® (ofatumumab) for relapsing MS
2020 - Society-supported Wellness Research Group publishes exercise and physical activity recommendations for ALL people with MS
2020 -  National MS Society, Consortium of MS Centers, and others establish the North American MS COVID-19 Clinical Database
2020 - FDA approves Oral Bafiertam™ (Monomethyl Fumarate) for relapsing MS
2020 - FDA approves Oral Zeposia® (Ozanimod) for relapsing MS

Download a Timeline of MS Research Progress (.pdf).

 

Saturday, March 26, 2022

Experts Agree on Pathways to MS Cures

 A global collaboration led by the National MS Society is focusing on the most promising research to cure multiple sclerosis for every person affected by the disease. Just as the experience of living with MS is different for every person, every person’s cure for MS may be different.
 
Multiple Sclerosis JournalThe Pathways to Cures for MS Research Roadmap, which outlines the research needed to reach these cures, has been published in the Multiple Sclerosis Journal.
 
“Curing MS is within our reach,” said Bruce Bebo, Ph.D., Executive Vice President of Research at the National MS Society, and lead author on this paper. “And when we talk about curing MS, we’re talking about curing MS for everyone. The roadmap, now endorsed by over 20 national and international MS organizations, will drive progress by increasing alignment and focus of global resources on high priority research questions.”
 
The research is focused on three distinct — yet overlapping pathways: stopping MS disease activity, restoring function by reversing damage and symptoms and ending MS by preventing new cases.
 
Explore each pathway at pathwaystocures.org
 
In this roadmap, the National MS Society outlines the research needed to: 

  • Reduce or eliminate the impact of MS before symptoms appear through early detection.
  • Prevent worsening of quality of life and prevent disease progression for each person with MS through precision medicine. 
  • Improve tissue repair to reverse or slow MS progression and improve symptoms.
  • Implement rehabilitation and symptom management strategies to restore function, reverse MS symptoms and enhance quality of life.
  • Prevent MS before it occurs by limiting exposure to MS risk factors in the general population.
  • Reduce or eliminate the impact of MS before onset of signs/symptoms by identifying pre-clinical MS in the high-risk population.
 Authors of the paper highlight the need to increase participation of underrepresented groups in MS research. The lack of diversity in MS research is a critical issue limiting progress.

This roadmap is designed to be a starting point for a dialogue among MS organizations. The authors encourage MS research funders and advocates to seek more opportunities to collaborate on research that addresses the areas targeted in the roadmap. The National MS Society has already begun supporting research projects aligned to this to help drive progress in these critical pathways.
 
An initiative this scale requires significant early momentum and leadership. The National MS Society is grateful for the support of our Pathways to Cures Lead Investors – Kathleen and Jim Skinner, Laura Larson, Cathy and Bill Onufrychuk, and an anonymous donor – who have collectively contributed $13 million to bring this roadmap to the world and inspire action. “We are pleased to be at the front of this incredible work and have confidence that the National MS Society has what it takes to provide leadership in the global MS movement,” said Kathleen and Jim Skinner.

Pathways to Cures for Multiple Sclerosis Research Roadmap,” by B.F. Bebo, M. Allegretta, D. Landsman, K.M. Zackowski, F. Brabazon, W.A. Kostich, T. Coetzee, A. Ng, R.A. Marrie, KR Monk, A. Bar-Or, and C.C. Whitacre on behalf of the National MS Society’s Scientific Advisory Committee and Pathways to Cures Roadmap Task Force, is published in the Multiple Sclerosis Journal.
 
This is an open-access paper and can accessed in full by anyone.