2013 is a very important year for The ALS Association Michigan Chapter as it marks our 25th Anniversary year of providing care and services to those fighting ALS in Michigan. The Michigan Chapter was founded on February 22, 1988 to serve the needs of those living with Amyotrophic Lateral Sclerosis and their caregivers. We continue to fulfill our mission 25 years later by serving families across the great state of Michigan and in 2012 expanded services through a regionalized care model which now includes transportation for patients to ALS Centers across the state. Patient access to exceptional care through multi-disciplinary teams at one of our clinical partners including the ALS Association Centers of Excellence remains one of the most important programs we provide. As we toast the beginning of a new year please join us in helping us celebrate 25 years of service in Michigan.
Simple Ways to Stay Involved in 2013
Every January, friends and family make New Year's resolutions in an effort to make a difference in their lives. Imagine making a resolution that not only benefits you, but also those courageously battling ALS. You can take the fight against Lou Gehrig's Disease to the next level by supporting our chapter even more in 2013.
We are incredibly grateful for everything you have done and continue to do for those living with ALS. Listed below are a few ways you can further your partnership even more with our chapter in the New Year. Many of these suggestions you may already do, but some might be new for you.
- Ensure that your loved one living with ALS enrolls in the National ALS Registry.
- Take the fight to Capitol Hill and become an ALS Advocate.
- Participate in the next Walk to Defeat ALS® event in your area.
- Attend one of our Chapter events.
- Become a Chapter volunteer.
- Learn more about all of the giving options available to you.
Thank you for striving to make a world without ALS a reality. The thousands of people living with this disease may not know your name, but they certainly feel the impact of your commitment.
Sincerely,
Susan Woolner
Executive Director
The ALS Association Michigan Chapter
Advocacy and Public Policy
2013 Advocacy Day and Public Policy Conference
Patient and Caregiver Services
Ask the Doc: New Potential Drugs for ALS
Monthly "Question and Answer" with Dr. Kasarskis -- The topic this month is, "New Potential Drugs for ALS" Read the full story.
We have a variety of resources to help you improve your quality of life. Please learn more about our support groups and caregiver tips to enhance your ability to deal with the physical and emotional issues associated with ALS.
Dealing with Tough Transitions in Care
Dealing with the healthcare system and managing critical periods of transition can be challenging to people with ALS and their caregivers. Here are two organizations that may be helpful:
• CarePlanners
- A fee-based service that provides advice on evolving needs, including assessment, 24/7 access to care planning experts, resources, medical billing and Medicare charge experts
- Founded by Dr. Nancy Snyderman, a surgeon and chief medical expert on NBC News, and Alan Blaustein, a cancer survivor and investor
- Staffed by nurses, nurse practitioners, social workers, Medicare specialists, insurance billing and claims experts
- Call 800.989.3588 or visit www.careplanners.com for more information.
• National Transitional Care Coalition
- A nonprofit organization that includes organizations and individuals committed to addressing problems inherent with transitions in care, such as being discharged from a hospital or needing a new level of care
- Founded in 2006 by the Case Management Society of America
- Provides information and resources for consumers and health professionals, including a “Patient Bill of Rights During Transition of Care,” a toolkit for hospital discharge and guidelines for a successful hospital stay
- Visit http://www.ntocc.org/ for more information.
Upcoming Webinars
 |
Research
Webinar Tuesday, January 15, 2013 at 1:00 p.m. Pacific Time, 3:00 p.m. Central, 4:00 p.m. Eastern Hosted and organized by The ALS Association’s Research Department Click here to register for the call and get call details |
Communication Options for Persons Diagnosed with ALS and FTD
Monday, January 28, 2013 at 11 a.m. Pacific, 1 p.m. Central, 2 p.m. Eastern
Speaker: Alisa Brownlee, ATP, The ALS Association Greater Philadelphia Chapter
Hosted and organized by The ALS Association’s Care Services Department
Call-in toll-free number (US/Canada): 877.668.4490
Session number: 825 686 842
Session password: Atcall2013
Click here to attend this webinar.
Research Update
ALS Association TREAT
ALS™ Portfolio to Fund Ten New Awards Focusing on ALS TherapiesThe ALS Association’s Translational Research Advancing Therapies for ALS (TREAT ALS™) portfolio will include 10 new awards, which will fund grants, drug discovery contracts and clinical and research studies aimed at finding improved treatments for people with ALS.
TREAT ALS™ will fund two clinical management grants, three drug discovery contracts, two clinical pilot studies and three biomarker studies. Currently, the TREAT ALS™ portfolio has 80 active research projects with a total award value of $12 million.
Click here to read the full article.
News from the International Symposium on ALS/MND in Chicago
From Dec. 5 - 7, scientists from around the world gathered in Chicago, Ill. to focus on progress in hastening treatments and a cure for Lou Gehrig’s Disease at the 23rd Annual International Symposium on ALS/MND. The ALS Association is pleased to have been an official sponsor of this event. As the meeting concluded, The ALS Association’s Chief Scientist, Lucie Bruijn, Ph.D., provided an update, below on three recent clinical trials involving people with amyotrophic lateral sclerosis (ALS) presented at the symposium.
Click here to read the full article.
ALS Association-Funded Researchers Discover New Links Leading to Neuron Death
A team of researchers have unveiled a process which places neurons at risk of cell death. This finding characterizes numerous neurodegenerative diseases and emphasizes the connection between several proteins known to go awry in ALS and a related disease, frontotemporal dementia (FTD). This research appears in today's edition of the Proceedings of the National Academy of Sciences.
The first protein involved is TDP-43; a lack of this protein has been shown to cause both ALS and FTD. This study revealed that when there is a dearth of TDP-43, a second protein, sortilin, is made in excess. Researchers found some copies of that protein are defective.
Click here to read the full article.
How You Can Help
Keeping A New Year's Resolution
Here is a New Year’s
resolution that you can feel good about keeping that will take care of you and
your loved ones. At this time of year we all make resolutions which may be a
challenge to keep despite all our good intentions. Take some time now to make
sure you have these key documents in place and up to date, in case it becomes
necessary for another person to act on your behalf or in the event of your
death.1. An Advance Medical Directive
This document outlines what kind of care you want to have if you are unable to make medical decisions for yourself.
2. A Durable Healthcare Power of Attorney
A healthcare power of attorney appoints someone to consider your medical circumstances and make health care decisions for you according to your wishes.
3. A Durable Financial Power of Attorney
A financial power of attorney appoints someone to make financial decisions for you if you are unable to make them yourself.
4. A Will
A will directs the distribution of your assets after your death and is an opportunity to communicate a heartfelt remembrance. A will can serve as a loving testament to the people and causes you care about. If fighting ALS is important to you, a bequest to our chapter is one of the easiest and most popular ways to help fund our work to eradicate this devastating disease.
Once you have these documents, be sure to keep them in a safe place and advise loved ones of their location. Then you can rest easy knowing you are well prepared.
Please contact our office for more information or if we can be of assistance.
Posts
No comments:
Post a Comment