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.
Sincerely,
Kara Cantoni
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
Holidays with ALS
The holiday season can be filled with stressors—good and bad—for most people. I strongly encourage everyone I work with to set boundaries and stick with them for the holidays. This is especially important if your holiday celebrations look different than they did in the past due to ALS. Conserving energy, sticking to routines, and getting rest are all essential components of maintaining your health, and we tend to overextend ourselves during the holidays.
What is your celebration going to look like this year? Is it easier for people to come to you than for you to travel to others’ homes? Find what works for you—invite everyone you would normally socialize with during a “holiday open house” for several hours OR schedule one or two family visits every few days. Some people prefer to do it all at once, while that might be overwhelming or intimidating to others. Have everyone bring cookies or a holiday treat to share, and you can offer beverages—cocoa, coffee, tea, etc. This puts less stress on yourself and your loved ones.
Decide which traditions are important and prioritize those. Your family and friends might be the “go go go” kind during the holidays. Pick which family traditions you would like to participate in and decline those that are too taxing, don’t hold a special meaning to you, etc. Your loved ones will understand.
Don’t spend too much money trying to create the “perfect” holiday. Spend what you can afford, and remember that the gift of time and kindness goes a long way. Children will remember memories and time spent with you long after they remember what you gave them in December 2024.
Allow yourself to partake in holiday goodies, just never drink and drive, and watch alcohol interactions with certain medications.
Schedule downtime for yourself, your loved ones, and your caregivers. Most people overextend themselves, and rest and relaxation are a great treat. They are also a nice way to create quiet and quality memories with loved ones.
Enjoy yourself! Happy Holidays,
Joanna Nunez, MSW, LCAS, LCSW
High Protein Holiday Treats
ALS United North Carolina reminds us that good nutrition is important for everyone, but it can be a bit more challenging when living with ALS. Chewing, swallowing, or fatigue can be obstacles to good oral intake. A decreased appetite might be an additional obstacle to meeting your nutrition needs. To overcome some of these challenges and meet your protein demand – since protein provides the building blocks for muscle and bodily tissues – here are a few tips and reminders.
Protein comes from both animal sources (think: beef, pork, seafood, eggs, dairy) and plant sources (think: beans, nuts, oats, soy). Eating protein from a variety of sources is good for your health; shifting to more plant sources and seafood is great for gut health and moderating saturated fat intake. Here are some ideas for protein-rich foods and snacks, with the holidays in mind:
Participate in ALS Advocacy
We Want to Hear From You!
ALS United North Carolina has joined our ALS United partners nationwide for a survey to learn about the issues that are most important to you regarding ALS care and research.
We want to learn from your stories and experiences to establish our advocacy priorities. The feedback you provide via the survey will help guide our focus as we meet with lawmakers and promote legislation that is important to the ALS Community.
You are the most important part of our advocacy efforts. Visit our website to learn more about how to be an ALS advocate.
The survey is open until December 18th.
Volunteer Spotlight: Manohar Tamhankar
ALS United North Carolina would like to say a big “THANK YOU” to Manohar for his dedication and assistance to the NC ALS Community. Manohar volunteers at our Raleigh office packing new patient binders and mailings and filling in wherever needed. Manohar always puts a smile on our office staff’s faces. We are grateful for Manohar!
Manohar’s Story:
“Born in India and educated till my undergraduate studies. Came to US for a Masters program in Engineering. After graduation, got married (to a physician) and we worked for 14 years. Afterwards went back to India and started my own business in engineering and successfully ran it for 14 years. As the children grew up, we decided to return to USA in 1994. I switched to computer science and we worked till 2012.
Around 2010 my wife, Meena, was diagnosed with ALS. During her illness we worked closely with the ALS chapter in New York and received a lot of advice and help from the chapter. As life started getting more difficult, with children moving out, we moved to Durham, NC in 2012 closer to my son and daughter. We also worked closely with ALS clinics and advisors with the Raleigh chapter and hospitals; however, the disease progressed and Meena passed away in 2014.
A couple of years after her passing away, I decided to offer my services to the local ALS chapter as a tribute for the help we had received. Since then I have been working with Raleigh ALS chapter personnel. I sincerely feel very content by helping the ALS chapter to the best of my abilities and I intend to offer my services as long as I can.”
Tell Us Your Why!
We want to hear what brings you to ALS United North Carolina and what leads you to support our organization. Stories, testimonies, and memories can be a powerful tool in bringing awareness to this deadly disease. We thank you in advance for sharing!
Upcoming Events
ALS United NC & Community Events
- January 29th: Drive Out ALS at Drive Shack in Raleigh
- March 29th: Ice Out ALS at the Carolina Hurricanes Game