A Message From Our VP of Care Services & Advocacy, Kara Cantoni
Learn more about the support available to you through ALS United NC
Dear ALS Community,
We are thrilled to introduce the Care Connection Newsletter, brought to you by the ALS United North Carolina Care Services team. This bi-monthly newsletter is created with you in mind, with the goal of providing valuable resources, sharing stories of hope, and offering opportunities for connection as you navigate your journey with ALS.
Each edition will feature insightful tips, important updates, and stories from others who are walking this path alongside you—because you are not alone. We hope the newsletter serves as a source of comfort, practical support, and inspiration.
Thank you for being an important part of our ALS family. We look forward to connecting with you through this newsletter and supporting you every step of the way.
Kara Cantoni, OTR/L
Support Group Schedule
Join a virtual support group today!
Meetings provide information on ALS-related topics, encourage sharing, and create an informal support network. All support groups are held virtually.
Knowledge Hub: Research, Resources, and Hope
Empowering the ALS Community with Information
Intimacy with ALS
Just in time for Valentine’s Day, Care Services Coordinator Joanna Nunez discusses ALS and Intimacy. She has presented this before a live audience in 2022 at the International MND Alliance Professionals Forum and for several local ALS organizations. In her 2025 presentation, she introduces social media’s influence on ALS Awareness and physical intimacy, as well as the most up-to-date studies on ALS and the obstacles it can present with physical and emotional intimacy.
ALS in the Media
Spreading ALS Awareness with the Easter Family
WCNC shares the emotional story of the Easter family – a North Carolina family that has a total of 39 family members throughout 3 generations with confirmed cases of ALS. The Easter family shares their experiences with ALS and their hope for QALSODY (toferson), a treatment available for those with the SOD1 gene mutation.
Helpful Resource Alert!
Empowering the ALS Community with Resources
The myTube website provides valuable information about feeding tubes, specifically for people living with ALS. It aims to be a resource for those considering a feeding tube, as well as those who have already had a feeding tube placed. It covers reasons for their use and what to expect during the process, offering guidance on managing the tube and improving quality of life.
Event Alert: Joe’s Camp with the Joe Martin ALS Foundation
Free overnight camp for kids, ages 8-13, whose families are touched by ALS.
Get Involved: 3rd Annual Ice Out ALS
Come join us for a night of fun and excitement as we cheer on the Carolina Hurricanes and show ALS awareness!
Please join us on Sunday, March 2nd, 2025, at 5:00 pm at the Lenovo Center (1400 Edwards Mill Road, Raleigh). Tickets will include a small donation to ALS United NC and a free Hurricanes Rally Towel!
Faces Behind the Care: Meg Rayder, MSW
ALS United NC would like to give a big shoutout to Meg, Caregiver Chat Time Support Group Facilitator!
I have had the privilege of being involved with ALS United for the past six years, during which time I have served as the facilitator for Caregiver Chat Time. This role has been both an honor and a profoundly meaningful part of my professional journey. ALS affects the entire family system. Recognizing this, my primary goal in facilitating Caregiver Chat Time is to provide critical support, guidance, and education to care partners.
In this role, I strive to create a safe and compassionate space where caregivers feel heard, validated, and empowered. The support group offers an opportunity for participants to share their experiences, exchange practical advice, and build connections with others who truly understand the unique demands of caring for someone with ALS. I am constantly learning from our group. Witnessing care partners find inner strength, adapt to evolving challenges, and continue to provide compassionate care under incredibly difficult circumstances is both humbling and inspiring. It is my continued honor to support these remarkable individuals, helping them navigate the caregiving journey with greater confidence, resources, and a sense of shared understanding.”
– Meg Rayder, MSW
Thank you for all that you do to serve the ALS community, Meg!
March 29th: Ice Out ALS at the Carolina Hurricanes Game
April 25-27th: Joe’s Camp
May 17th: Down East ALS Walk
June 7th: Winston Salem ALS Walk
October 18th: Greensboro ALS Walk
October 25th: Wilmington ALS Walk
November 1st: Charlotte ALS Walk
