With the emergence of gene-targeted therapies, knowing whether your ALS has an underlying genetic cause is becoming more important. Research has shown that about two-thirds of people with familial ALS and about 10% of people with sporadic ALS (no family history) have a mutation (or change) in at least one of the more than 40 genes that have been linked to the disease.
For people living with ALS, the enjoyment and escape video games may have once brought is far too often another thing the disease takes from them. As muscles weaken and fine motor functions decrease, handling video game controllers and keeping up with fast-paced game play can cause frustration and cause people to give up on gaming all together.
The ALS Association has awarded more than $700,000 to support five promising early career scientists through its Milton Safenowitz Postdoctoral Fellowship Program. This program encourages a pipeline of ALS researchers and innovative ideas that can lead to better ALS treatments and care.
We spoke with Pam Knott, vice president of data and technology at The ALS Association, to learn more about how the Association is harnessing the power and potential of big data to speed up the process of empowering people to live longer lives, to access care, to bring new treatments to market, and to reduce the harmful impact associated with the disease.
We talked with Dr. Stephen Johnson, postdoctoral fellow from Massachusetts General Hospital, to learn more about his research focused on ways to accelerate discovery of efficacious therapeutics through identification and validation of novel outcome measures using readily available technology.
The ALS Association spent over $2 million helping fund the development and clinical trial of AMX0035. When the results of that trial showed it was safe and effective in treating ALS, the ALS Association led an advocacy campaign to push the FDA to approve the drug. After two years of advocacy, the FDA finally approved AMX0035.
We talked with Dr. John Kalambogias, postdoctoral fellow from Columbia University, to learn more about his research focused on dysfunction and degeneration of corticospinal tract neurons in ALS mouse models.
We discussed the incredible strides being made in the science of preventing ALS with Dr. Stephen Goutman, Director of the Pranger ALS Clinic and Associate Professor of Neurology at the University of Michigan.
We spoke with Dr. Melinda Kavanaugh, clinical social worker and associate professor at the University of Wisconsin-Milwaukee, to understand more about young caregivers and the potential harms caused by the lack of quality of sleep they receive and what can we do about it.
We talked with Dr. Devesh Pant, postdoctoral fellow from Emory University, to learn more about his research focused on revealing the underlying molecular mechanisms in ALS caused by the SPTLC1 mutations.
We talked with Dr. Ahmad Al Khleifat, recent winner of the distinguished ENCALS Young Investigator Award and postdoctoral fellow from King’s College London, to learn more about his research focused on disease gene identification through next generation sequencing, coupled with advanced data analysis to deliver diagnostic tools for complex disease genetics.
Expanded Access, or “compassionate use” as it is often referred, allows patients with a terminal diagnosis early access to new therapeutics that show promise – even if the patient is not involved in the ongoing clinical trial – or if the medication has not yet been approved by the FDA.
The American Academy of Neurology, The ALS Association and the American Brain Foundation have awarded the 2022 Sheila Essey Award to Matthew Kiernan of the Brain and Mind Centre at the University of Sydney in Australia and a member of the American Academy of Neurology. We recently caught up with Dr. Kiernan on Connecting ALS to discuss advances in ALS research since he first entered the field and how the Essey Award will help move his research forward.
The ALS Association has launched a petition calling on public and private health insurers, as well as federal and state governments to prohibit the use of arbitrary, discriminatory value assessments that limit access to ALS drugs.
Carianne “Cari” Meystrik is a true hero to her family, friends and the entire staff at The ALS Association Tennessee Chapter. Cari and her husband Chris had only been married for 6 ½ years when she was diagnosed with ALS in 1998 while pregnant with her fourth child. The couple thought their dreams of growing old together and raising a family were over. Instead, despite the various obstacles brought on by ALS, the Meystrik family has had incredible adventures and made precious memories that carry them through the tough times.