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Living with Purpose: A Look Inside One Man’s Decision to Forgo Invasive Respiratory Support

Deciding on a respiratory care plan can be one of the most difficult decisions to make. Jim Watkins, Ph.D., an accomplished education professional with a career spanning both the classroom and the private sector, leaned on his faith and family when deciding on a non-invasive approach to his respiratory care needs.

 

Teen Author Reflects on Coping with her Father’s ALS Diagnosis and Finding her Inner Strength

We recently had the pleasure of sitting down with Sarah Caldwell, the author of the honest and emotionally brave memoir Just to Make You Smile: A Teenage Daughter’s Reflections on Loving and Losing her Father to ALS. The candor in which Caldwell shares her experience provides a rare, firsthand glimpse into the fragile teen psyche while daring to leave readers with a sense of hope and purpose.

Deciding Whether a Support Group is Right for You

Sometimes the people that can best relate to the stress and strain of life with ALS are those that have found themselves facing similar circumstances. Although each person’s ALS journey can vary drastically, support groups offer unparalleled comfort and connection for both people with ALS and their caregivers.

 

Upcoming Webinars

Join our monthly webinar series to learn how to create some meaningful family keepsakes using today’s technology and also learn more about ALS and the clinical trial process. Coming up in January, discover the latest research updates from the NEALS and MNDA conferences and learn about ways ALS clinical trials may be improved.

Create Family Keepsakes with Today's Technology

Join The ALS Association’s Care Services team on Monday, December 14, 2015 at 2:00 PM EST.


 

Research Updates - NEALS & MNDA

Join Dr. Terry Heiman-Patterson on Wednesday, January 13, 2016 at 2:00 PM EST.


 

How can we use predictions of individual ALS patient disease progressions to improve ALS clinical trials?

Join David L. Ennist, PhD, MBA on Tuesday, January 19, 2016 at 4:00 EST.

 

The ALS Association Hosts Public “Ask The Experts” Panel Discussion

Lucie Bruijn, PhD, MBA, The ALS Association’s Chief Scientist will discuss some of the exciting new research projects supported by The ALS Association, including how collaboration with academia and industry partners have contributed to a better understanding of the disease, and facilitated preclinical trials and studies. Dr. Bruijn will facilitate a discussion with a panel of international researchers who will be offering insights into research involving genetics, biomarkers, drug development and clinical trials.

 

Diaphragm Pacing System Developed by Synapse Biomedical Continues Efficacy Trials

Synapse Biomedical is hard at work to discover how its NeuRx® diaphragm pacing system (DPS) can help improve the lives of people living with ALS. Their patented diaphragm pacing system has shown positive results in people with spinal cord injuries and continues to be investigated as a potential therapy for people with ALS.

The ALS Association Partners with Permobil to Protect Your Access to Complex Rehab Technology

Permobil, a partner of The ALS Association, has been designing and building power wheelchairs for more than 40 years. Today, as the world’s leading provider of power wheelchairs, Permobil works alongside The Association to ensure that people with ALS have ongoing access to this life-changing equipment.

 

Hope in Progress: An Overview of Current Promising ALS Research Studies

If you missed the Clinical Trial Pipeline webinar, we’ve gathered the Cliff Notes version for you here! Find out what Jeremy Shefner, MD, Ph.D, Associate Director, Barrow Neurological Institute and Chair, Department of Neurology believes are the biggest challenges scientists are facing in the fight against ALS in addition to promising research leads now being investigated by top ALS research experts today.

 

Looking for help?

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

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Feedback

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

 

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