By Amanda M. Haidet-Phillips, Ph.D., MDA’s ALS Scientific Program Officer
Throughout 2014, everyone from celebrities to school children to MDA’s own CEO could be seen dumping ice water over their heads to raise awareness and dollars to fight ALS. It was a phenomenon that shined an urgently-needed spotlight on a disease that steals everyday freedoms and abilities like walking, talking, hugging, and even breathing. More than that, it steals the lives of our loved ones far too soon.
As the ice has thawed from last year’s social media sensation, it’s important to remember that ALS is a 365/24/7 issue that MDA and our community of supporters are fighting every day. What’s MDA doing now with the dollars we raised through the Ice Bucket Challenge? What progress is on the horizon for families living with ALS? In honor of ALS Awareness Month in May, I wanted to take a moment to share some of the latest in research, care and advocacy and urge your continued support.
What will it take to find more treatments and cures for ALS?
I often get asked why more progress hasn’t been made in the fight to end ALS. There are three key areas we need to better understand — areas that MDA and the researchers we fund are currently exploring as we work together to accelerate progress:
- We need to learn more about what causes ALS. The majority of genes causing familial (inherited) ALS have been identified just within the past five years. This is exciting because each gene discovery uncovers potential targets at which to aim therapies. Additionally, it helps researchers better group ALS patients who wish to participate in clinical trials. MDA is currently working to uncover how newly identified genes lead to ALS.
- We need more research models to study the disease. These could include animal models, which have long been used in testing new drugs, enabling researchers to evaluate how the body’s cells and tissues interact with a drug or to determine whether a drug has an effect against one or more processes that cause disease. They could also include human cellular models that are created using cells taken from people with the disease.
- Biomarkers — Biological indicators that can signify disease presence or progression are urgently needed to help researchers and clinicians diagnose ALS as early as possible and measure disease progression in patients. The use of biomarkers could speed development of promising drug candidates and allow for more informed decisions in clinical trials to test experimental drug therapies.
How is MDA helping families with ALS?
Every dollar we raised through the Ice Bucket Challenge and MDA fundraising events each day is helping save and improve the lives of the families we serve. Here’s a glimpse at how contributions are at work to fight ALS right now:
In January, the best and brightest scientists from across the globe submitted applications for MDA research funding. This summer, we will be awarding new research grants to help fund the next wave of discoveries. Of the more than 350 applications we received, more than 20 percent are focused on ALS. We look forward to announcing new ALS research grants this summer. Last year alone, we funded 64 ALS research grants with a total investment of more than $17.2 million.
Data collection and analysis
MDA is actively involved in collecting and analyzing data from people with ALS at our nationwide network of clinics. The MDA U.S. Neuromuscular Disease Registry, launched in 2013, records information about medical care provided to patients who are taking part in the registry to:
- Better understand the number of individuals living with ALS
- Learn which people with ALS have the best outcomes and why to help ensure the best treatments and care
- Provide valuable information for researchers to use in studies
- Make clinical trials easier and more effective to conduct
Learning more about ALS is an important step in the battle to defeat it. MDA is currently piloting our registry in a subset of clinics, with plans to expand nationwide.
Support for families
Not only is MDA working to better understand and treat ALS for the future, we’re committed to helping improve life for families living with ALS today.
- Access to the best care — Each year, thousands of people affected by ALS receive health care services at more than 150 MDA clinics in the United States, of which more than 40 are designated as MDA/ALS centers. These centers are directed and staffed by the nation’s leading specialists in ALS to ensure families get the best, most comprehensive care. MDA provides vital financial support to these clinics.
- Support and education — MDA sponsors ALS support groups for people with ALS and their caregivers and children, and we hold ALS educational events across the country.
- Care coordination — MDA’s online tool myMuscleTeam lets families affected by ALS create a private Web site where they can post updates, keep friends and family informed and list requests for assistance on an electronic “care coordination calendar.”
- Help with medical equipment — In hometowns across the country, MDA makes available “gently used” and much needed devices, such as wheelchairs, shower chairs, hydraulic lifts, walkers, communication devices and more that help people with ALS remain independent.
- Reliable information — On mda.org, in print and through email and social media, MDA gives people living with ALS and their families up-to-date information about research, health care and help for daily living.