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Providing Care for People with ALS in Hurricane-Affected Areas

The ALS Association established a Disaster Relief Fund to ensure that people living with ALS and their families in hurricane-affected areas will continue to have access to chapter services and programs as they begin rebuilding their lives. Please view our disaster preparedness guide and read about how we are providing critical support during this devastating time.

 

Living with ALS Resource Guides: English and Spanish Resources Available

The ALS Association recently increased its online and printed offerings by introducing 11 new Living with ALS resource guides. The Association worked closely with authors from ALS Association chapter network, ALS Treatment Centers or Excellence and Recognized Treatment Centers, and other ALS organizations to rewrite the original Living with ALS resource guides. The series, developed for people living with ALS, family members, caregivers, and people interested in learning more about ALS, were designed to inform and educate people about ALS in a comprehensive and easily understood format.

 

The ALS Association Youth Initiatives

Coping with ALS can be difficult for the many children and youth of a family member living with ALS, given differences in emotional maturity and lack of age-appropriate educational and supportive resources. This is a widespread concern, as a significant number of people living with ALS report having a child who is impacted by the disease. Moreover, children are tasked with the responsibility of taking part in the physical care of a person living with ALS, yet had little to no training or support, leading to anxiety and concern in their lack of skill. In order to assist with the education and support of youths who are impacted by a loved one’s ALS diagnosis, The ALS Association collaborated with Dr. Melinda S. Kavanaugh PhD, from the University of Wisconsin, to create resources that will directly benefit this group.

 

Empowering People Living with ALS

Speech-generating devices (SGDs) are defined by the Centers for Medicare and Medicaid Services as, "durable medical equipment that provides an individual who has a severe speech impairment with the ability to meet his or her functional speaking needs." But for people living with ALS, these devices can be life changing. AAC empowers individuals to continue participating in their personal, social, professional and medical interactions

Is a Low-Profile Feeding Tube Right for You?

As ALS progresses, some people may have difficulty reaching the caloric intake needed to maintain a healthy weight. If you are losing weight or struggling to eat, your doctor may recommend an enteral feeding tube to help you get the nutrients you need to maintain your weight and energy.

 

Medical Information Materials

Over the past several months, The ALS Association has developed a suite of medical information materials intended to intended to educate and inform healthcare professionals and emergency personnel, like paramedics, who may have many questions about how to provide care for someone living with ALS.

 

Upcoming Care Services Webinars

The ALS Association and Option Care Webinar Series: Home Infusion Basics

The National Care Services team is excited to present the first collaborative educational webinar on Home Infusion Basics with our national partner, Option Care.

Webinar #1: Home Infusion Basics
September 26th from 6:00 - 7:30 pm EST & September 27th from 5:00 - 6:30 pm EST

As one of the nation’s leading home infusion service providers, Option Care will present key concepts of home infusion therapy, from care planning and supplies required, to training and support services. The webinar will be made available September 26th and 27th, please register in advance to attend by using the link here: https://engage.vevent.com/rt/medicaleducationcouncil~092617

Please note that for optimal viewing, it is best not to use VPN, but instead to connect directly to the Internet. Please disable your pop-up blockers in order to view the content in its entirety.

This event is being streamed. It is recommended that you listen via your computer speakers.


A second collaborative webinar will be held on October 3rd from 6:00 - 7:30 pm EST and October 4th from 5:00 - 6:00 pm EST. Option Care will cover new content on this webinar, so please keep an eye out for the registration link for Webinar #2 in the coming weeks.

Join our monthly educational webinar series to learn more about the latest care services updates and trending topics in ALS.Join our monthly educational webinar series to learn more about the latest care services updates and trending topics in ALS. Click HERE to access information on upcoming webinars and on-demand recordings of archived webinars.

ALS Research Progress – Hope for the Future
Speaker: Jill Yersak, PhD, Associate Director of Research Communications, The ALS Association
Monday, September 18, 2017
2:00 pm Eastern Time
More Details

In August 2014, millions of people participated in the ALS Ice Bucket Challenge to help treat and cure ALS as quickly as possible. Since then, The Association has doubled down on its commitment to lead the fight against ALS by investing in the most promising ALS research in the world. We are now three years past the ALS IBC and are seeing some exciting research progress stemming from the projects we invested in. On September 18th, please join The ALS Association’s Associate Director of Research Communications, Dr. Jill Yersak, to learn how the support of people like you expedite global collaborative research efforts leading us towards discovering promising treatments and a cure.

Respiratory Considerations and ALS
Speaker: Louis Libby. MD, Pulmonologist, Providence ALS Center
Monday, October 16, 2017
2:00 pm Eastern Time
Details and webinar description to follow.

Cognitive and Emotional Changes in ALS
Speaker: Beth K. Rush, PhD, Psychologist, Mayo Clinic
Monday, November 20, 2017
2:00 pm Eastern Time
Details and webinar description to follow.

National ALS Registry Update
Speaker: Lauren Stanford, Public Policy Associate, The ALS Association
Monday, December 11, 2017
2:00 pm Eastern Time
Details and webinar description to follow.

 

Looking for help?

The ALS Association's nation-wide network of chapters and clinical partners provide localized support in communities across the country.

ALS Association Chapters | ALS Association Certified Centers and Clinics

ALS Information and Resources

 

Feedback

We welcome your thoughts, questions, article ideas, topics of interest, observations and more at ALSInsight@alsa-national.org.

 

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