Big Feelings in Familial ALS: A Community Conversation about Generational Trauma

When someone is diagnosed with ALS, it can devastate a family. Imagine multiple family members being diagnosed within your lifetime. And knowing that other living family members and future generations might be at risk. Imagine growing up with the specter of ALS chasing you. Being ever-present. Your family tree becomes suspect. Who had it? Who…

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A Pulmonologist Explains Tracheostomy and Invasive Ventilation for People Living with ALS

Date/Time: Monday, June 19, 2023, at 12:00 p.m. CST Registration Link:  https://attendee.gotowebinar.com/register/4658833508087010396 About the Program: Not everyone with ALS will need or choose to have a tracheostomy, but there may come a time when it’s necessary for continued breathing. You may have respiratory weakness that can no longer be treated with a mask and non-invasive ventilation.…

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Understanding Statistical and Clinical Significance

Presenters: Dr. Jinsy Andrews (Columbia University), Dr. Christina Fournier (Emory University), Dr. Eric Macklin (Mass General Hospital) What do researchers and scientists mean when they describe a study as “statistically significant?” How do people with ALS and clinicians understand whether or not a treatment option is “clinically significant?” Join us for a webinar and panel…

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A Manual of Instructions: Maps for a Few Dark Places

A Manual of Instructions: Maps for a Few Dark Places featuring Dr. Scott Eberle with an introduction by CCALS Founder, Ron Hoffman Sunday, July 16, 2023 1:00 - 2:00 p.m. ET  It’s not often in life that you get a few maps for how to traverse the dark places of a serious illness. Scott Eberle, MD,…

A Neurologist Speaks on Advancements in Clinical Research for ALS

Join us for our July ALS Learning Series with Dr. Senda Ajroud-Driss, neurologist and director of the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine. She’ll discuss updates in ALS clinical research, provide information on trials that are currently recruiting, and review inclusion criteria, with a Q & A to…

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NINDS Fundamental Neuroscience Working Group Public Webinar

NINDS Fundamental Neuroscience Working Group Public Webinar   July 27, 2023 | 12:00 - 1:00 PM ET Please click this link to register for the webinar  What is the Fundamental Neuroscience Working Group? Find out more here: NANDSC Fundamental Neuroscience Working Group  FNWG Public Webinar Agenda (tentative) Introductory Remarks (Walter Koroshetz, 5 min) Committee Charge (Lyn Jakeman,…

Discover the Power and Flexibility of the iPhone for Those With ALS

Join me, Kristine Copley, our founder, Ron Hoffman, and tech genius Tom Meadows in a groundbreaking presentation about hidden and undocumented functionality in the Apple OS that can specifically benefit people with ALS.  Tom’s childhood friend, Steve, was diagnosed with ALS in 2021. Steve's disease progressed and using his phone became more and more difficult.…

ALS TDI Town Hall

Learn How ALS TDI is Partnering with Unite Genomics to Expand the ARC Study Led by ALS TDI and Unite Genomics Wednesday, August 9, 2023 | 3:00 - 4:00pm EDT The ALS Research Collaborative (ARC) has been gathering over eight years of comprehensive data from people with ALS, however, the untapped potential of participants' electronic…

ALS Learning Series: Supporting those Caring, Dying and Grieving

About the Program: In this Learning Series webinar, Professor Samar Aoun will share key findings and advice on enabling social networks to support people living with ALS/MND, making palliative care more widely accessible. A particular focus will be on bereavement support and family caregiver support. The Les Turner ALS Foundation is proud to offer this…

Ask Me Anything ALS: Genetic Testing

Why do some asymptomatic individuals consider ALS genetic testing? Why do some symptomatic individuals consider it? The decision is a personal one, and there are professionals to help us through the process: ALS neurologists and ALS genetic counselors. It can also be helpful to hear from individuals who have reached their own decisions. Join the…

Global Fundamental Rights Survey Results

Virtual

The International Alliance of ALS/MND Associations surveyed the community about the Fundamental Rights of People living with ALS/MND and Caregivers. Learn more about the data, strengths and weaknesses at a global level, the questions raised and the topics that require further attention, and how these compared to our 2021 survey.

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Nutrition: Journey from Beginning to End

Thursday, September 14, 2023, 12:00 p.m - 1:00 p.m CST Join us for our September ALS Learning series with Dr. Edward Kasarskis where he’ll discuss nutrition and hydration, constipation, and bowel management in ALS. The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to…

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