Informed Decision-Making in ALS: An Open Discussion on Tracheostomy and Invasive Mechanical Ventilation

Thursday, April 23 at 12 p.m. CT

Join us for an open and honest conversation about one of the more challenging decisions people living with ALS face: whether to pursue tracheostomy and invasive mechanical ventilation. Our panel discussion brings together diverse perspectives; through their stories and insights, this webinar will help people with ALS, their families, and care partners understand the medical, emotional, and practical considerations involved in this decision. Whether you're considering this option or supporting someone through their decision, this discussion will provide valuable perspectives to inform your journey. 

About the speakers:

Danielle Burks, LCPC: Danielle A. Burks, LCPC, is the founder of Journey to Healing, PLLC, a virtual mental health practice serving adults and couples. Danielle’s goal is to guide people toward deeper self-awareness by helping them discover their strengths and values, practice intentional self-care, build confidence, establish boundaries, and develop practical tools to cope with stress. In addition to her clinical expertise, Danielle brings a deeply personal perspective to her work. She served as a caregiver for her mother, who was diagnosed with ALS and stage four liver cancer. That experience profoundly shaped her understanding of grief, resilience, advocacy, and the emotional weight caregivers often carry. 

Matt Creen: A retired lawyer, Matt was formerly the general counsel of the Currie Motors Group. He was diagnosed with ALS at the Lois Insolia ALS Clinic at Northwestern Medicine in 2013. Since his diagnosis, he has been engaged with the Foundation every year, hosting a golf outing and dinner benefiting the Foundation, and an active member of our Support Services Committee. 

Melissa Diaz-Viera, LCSW: As a Licensed Clinical Social Worker, Melissa brings extensive experience in advocacy and community support. Diagnosed with ALS in 2023, Melissa is actively involved in various ALS groups and serves as both a NEALS Research Ambassador and Research Operations Coordinator for Project ALS, in addition to our Support Services Committee. 

Finding Your People: Real Stories of Community After an ALS Diagnosis

Thursday, May 28 at 12 p.m. CT

An ALS diagnosis can change everything — but it doesn't mean navigating the road ahead alone. In this panel discussion, Rob, Tina, Kelly, and Juan, people living with ALS, will share their personal stories of finding community, getting involved with organizations like Her ALS Story, I AM ALS, and the Les Turner ALS Foundation, and discovering the strength that comes from connection. Hear firsthand how getting involved transformed their journey. A live Q&A will follow. 

The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to the Gilbert & Jacqueline Fern Foundation & Tanabe Pharma America for sponsoring this webinar.

About the speakers:

Rob Akins is a retired engineer who spent most of his career at Motorola, working in R&D, engineering and procurement focused on liquid crystal displays for portable products. He and his wife, a retired middle school language arts teacher, reside in Arlington Heights. They have two grown children and two grandchildren, all living in the Chicago area. Their daughter works as an advertising copywriter, and their son is in finance. Robert enjoys applying his background in technology and personal experiences to help the Foundation better serve the ALS community. 

Tina Cascio joined the Foundation's Board of Directors in 2022 and the Support Services Committee in 2023. She has worked her entire career in the medical field and considers herself a temporarily retired nurse. Once there is a cure for ALS, she plans on returning to care for her patients. Tina cared for her mom throughout her fight with ALS until her mom passed in 2018. She is now in her own battle after having been diagnosed with ALS in 2020. Tina has been actively involved in community outreach and familial sponsor programs. She is also an active member of Her ALS Story. 

Juan Reyes is an ardent advocate for those suffering from ALS, having been diagnosed Oct. of 2015. Juan served 21 years in the United States Air Force as an Independent Duty Medical Technician and Clinic Superintendent. Currently, Juan is focused on improving services, research, and quality of life for ALS patients. He has shared insights with medical students and other healthcare professionals, enhancing understanding of ALS patient needs. His efforts have also taken him to our nation’s capital, engaging elected officials on behalf of patients. Juan actively serves on committees locally and nationally and is also a member of the I Am ALS executive board. His efforts have also taken him to our nation’s capital, engaging elected officials on behalf of patients. Juan actively serves on committees locally and nationally.

Kelly McGinn was diagnosed with ALS in April 2023. She is a mom, a fiancé, and a passionate advocate dedicated to raising awareness and sharing what this journey truly looks like. She is an active member of Her ALS Story. After retiring from work last fall, Kelly now focuses on her family, her strength, and making every day count. “I fight this disease every day—not just for me, but to show my daughter what strength and community truly mean. With my fiancé by my side, we’re living with ALS, but we’re also living with love, laughter, and purpose.”