We here, on the Care Services Team, are thinking of all our families during this unprecedented time. We understand that the enormous challenges of living with ALS have been immensely increased during the pandemic. While we are practicing social distancing at this time, our team is still available to help you connect to any resources you will be needing in these next few weeks. While our Equipment Loan Program is currently suspended to maintain the health and well-being of our families, we have transitioned our support groups, home visits and community partner education to video conferencing. Reach out to us anytime you need to talk, have questions or challenges in need of solutions. We remain committed to serving you.
Sincerely,
Suzanne, Mary, Megan, Emily and Tammie
The ALS Association is accepting applications for the Jane Calmes ALS Scholarship Fund, which was established in 2019 to support post-high school education for students whose lives have been impacted by ALS. Scholarship recipients receive up to $5,000 per year to help cover the cost of education. The fund was established by Mark Calmes, vice chair of the Association's national Board of Trustees, in memory of his wife, Jane, who bravely fought ALS for eight years.More Details
MAKE YOUR VOICE HEARD!
The ALS Association is recruiting people with ALS and their caregivers for the ALS Focus survey program to capture their needs, preferences and experiences as they meet the challenges of ALS.
The ALS Association created ALS Focus to put the preferences and experiences of people impacted by ALS at the center of ALS decision-making.Participating in ALS Focus will expand and develop new data from people with ALS and caregivers about the symptoms, burden that affect their lives.You are the expert on ALS - make your opinions and suggestions known!
When you sign up for the ALS Focus survey program and complete the quarterly surveys, you are helping to shape ALS public policy, inform clinical trial design, and strengthen care and service programs for people impacted by ALS.
This is a strictly confidential program. Your identifying information is never shared. All survey data isaggregated and is open and free to researchers all over the world and to the ALS community. You'll have access to your own data through the ALS Focus survey platform.
In this webinar, we will review the background that led to the creation of ALS Clinical Research Learning Institutes, show what these look like, and detail how patients and families can apply to participate. Several graduates of the program (called Research Ambassadors) will show firsthand how they are using the knowledge they gained through the curriculum to improve ALS research for everyone.
Ms. Brownlee discussed how to utilize common consumer technology equipment to set up a Smart Home, enabling residents to remotely access telephone, communication, internet connection, entertainment, and environmental control devices such as fans, lights, and door locks.
"How can I help?" ask many friends and neighbors. The answer: The ALS Care Connection! Learn how to easily use this private online calendar where family needs are posted. Friends, neighbors, and volunteers who want to help can then view and identify needs, activities, or errands they can fulfill.
Click Here to view a list of archived webinars recordings from NEALS
Click Here to view a list of archived webinars from The ALS Association
Research Update
The ALS Association partners with many ALS groups throughout the world to further research into ALS. One such study, in conjunction with Project ALS, focuses on an experimental therapy, jacifusen. This therapy works with antisense technology targeting the FUS mutation in some people with ALS. Though the FUS mutation is rare, The Association is working to improve the process of researching and finding therapies for rare forms of the disease to lead to more funding in general for rare genetic variations.Read More
Equipment Corner
Grasping silverware/pens, tying shoes laces and manipulating buttons are more challenging when hands and fingers start to experience weakness. There are a number of tools available to help maintain independence and save energy such as button hooks, built up handles, elastic laces and a specially designed pen. If you are having difficulty with coordination & strength in your hands, contact your care coordinator for suggestions.
COVID-19 Updates
See our
Care Services Covid-19 Update Newsletter with information, Q&A discussion on ALS & the virus and tips/apps here.
As we receive additional information and tips for staying at home, helpful apps and connecting with loved ones, we will post them in this sections. As we continue to prevent the spread of the virus, here are some additional resources.
One of the most important, but often overlooked, tasks for caregivers is caring for their own physical health. A caregiver's health and well-being is vital, and should not be placed on the back burner. In order to be able to care for your loved one, you need to make sure your own health does not suffer.
Here are some steps you can take as a care provider to keep yourself healthy, thereby protecting your loved one by making sure you are in the best shape possible:
Maintain a Nutritious Diet. While it is unlikely you are planning gourmet meals, and you may often find yourself eating on the run, you can still keep an eye on your nutrients. An apple, hard boiled egg, or low-sugar/sodium granola bar makes a good snack that you can eat on the go. Making slightly larger portions and freezing some for dinner later in the week is an energy efficient way to make two meals out of one. Getting proper nutrition will help with your energy levels, and will make a difference in your overall health.
Practice Good Hygiene. Frequent hand-washing lasting at least 20 seconds with soap and water, or the use of alcohol-based sanitizer, goes a long way toward keeping yourself and your loved one healthy. Disinfect frequently touched surfaces often, and try to avoid touching your face. Remind guests to wash and sanitize as well prior to coming over for a visit, and make sure any visitor that comes over is in good health.
Manage Emotions. Your emotional health is often tied closely to your physical health. Sometimes the stress of caregiving can lead some people to develop or increase unhealthy habits to cope, such as smoking, drinking too much, or misusing pharmaceuticals. Managing your emotions can be difficult when things feel overwhelming, but your mental health is just as important as your physical health.
Caregiving for a loved one can feel all-compassing, and it can be easy to put your own needs to the side. Making time for your own health and well-being is not a luxury, but rather a necessity! To be a good caregiver, you must be good to yourself.
Support groups provide opportunities for group members to share their personal experiences and to learn more about living with ALS. Meetings are free and open to all patients and concerned others. They occasionally offer speakers on relevant topics and are designed to share information as well as strategies for preserving the independence and quality of life of both people with ALS and their caregivers, and address the social, emotional and mental challenges of living with this disease. Please contact us if you have any questions about support groups.
All Support Groups Will Be Held Virtually Until Further Notice
Participants for each group will receive an email with the link to join the meeting. If you do not receive an email, reach out to your care coordinator for information.
Here are some helpful videos to guide you in signing in for our virtual support groups.
