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The ALS Association Texas Chapter
Connections eNewsletter
Read the Current Issue Below
Letter from The ALS Association
It's ALS Awareness Month! Tell Your Story.
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Do you hope for a world without ALS? Do you hope another family doesn't have to go through what you've gone through? Do you hope your children don't have to fear this devastating disease? Please take a moment to Tell Your Story about ALS.
We hope that by sharing your experience with Lou Gehrig’s Disease, you will encourage others to get involved in the fight against this disease. Whether you have the disease or have had a friend or family member affected, your story will help show people they’re not alone.
By lending your voice to this campaign, we can work together in May and beyond to form a collective voice for change.
Once you’ve shared your story on the website you can share it even further via social media. The more sharing in May, the better! Thanks to our corporate partner, Pride Mobility, the four stories that receive the most number of social media shares could earn our chapter Quantum Q6 Edge chairs for our loan closets! These chairs will then be made available to people living with ALS at no cost.
So please take a moment to Tell Your Story. You can also view and share other stories of hope! Thank you for your support during ALS Awareness Month!
Sincerely,
The ALS Association
Advocacy Day is just around the corner! Help us spread the news.
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Whether you will be in Washington, DC to attend our annual Advocacy Day and Public Policy Conference, or you'll be following the activity from home, you can help us spread the news. Visit our website to download facebook cover photos, badges, info cards and more.
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Show Your Appreciation to Our Veterans this Memorial Day
Every Memorial Day we take a moment to reflect on the bravery and courage of the men and women who have proudly fought for our nation. The ALS Association would like to send our deepest appreciation to all those who have served our country in the armed forces. We continue to support our military heroes, who are approximately twice as likely to develop ALS as the general public.
The Association has worked to provide veterans with ALS, their families and survivors with the care and benefits that they need, deserve and have earned. For example, in 2008, The Association led the fight to establish ALS as service connected disease at the Department of Veterans Affairs (VA), making veterans with ALS eligible for the highest level of benefits, regardless of when or where they served in the military or when they were diagnosed.
Benefits include health care, monthly disability payments, and grants to adapt a home or purchase a vehicle among other vital benefits. Survivors of veterans lost to ALS also are eligible for benefits. To learn more about VA benefits and how to apply, visit the military veteran section of our website.
In addition to helping those veterans living with ALS today, The Association is working to find a treatment through the Department of Defense’s (DOD) ALS Research Program (ALSRP). The program is explicitly designed to support projects that will help lead to the discovery of new treatments for ALS. The Association and advocates across the country have worked with Congress to provide nearly $40 million to the program, which has funded 23 research projects that, so far, have led to the development of three drug candidates.
You can help support veterans and everyone who has been touched by this disease by signing up to be an ALS Advocate.
Help us continue to fight for our veterans just as they have fought for us.
Patient and Caregiver Services
Ask the Doc: Organ Donation and ALS
Monthly "Question and Answer" with Dr. Kasarskis -- The topic this month is, "Organ Donation and 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.
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May 20, 2013 at 2 p.m. ET Click here to register for the call and get call details. |
Study of the NeuRx Diaphragm Pacing System in Participants with ALS
May 21, 2013 at 4 p.m. ET
Speaker: Kirsten Gruis, M.D., Associate Professor of Neurology, State University of New York
Click here to register for the call and get call details.
New Way to Track Disease-resistant Motor Neurons in ALS
A new technique for labeling motor neurons will allow researchers to study them in unprecedented detail. Because the technique identifies those motor neurons that are most resistant to the ALS disease process, it may help uncover clues about their resistance that can, in turn, point to new therapeutic approaches.
“It is difficult to distinguish a specific neuron population in the brain and spinal cord from among the hundreds of different neuronal subtypes,” explained lead author Hande Ozdinler, Ph.D., of Northwestern University. “And yet it is critical to achieve a clear identification of neurons that show selective vulnerability in ALS, in order to precisely manipulate them and to analyze them in detail.”
Click here to read the full article.
Scientists Report on Sheila Essey Award-Winning C9orf72 Gene Research
During the Sheila Essey Award for ALS Research presentation at the 2013 American Academy of Neurology annual conference in San Diego, Calif., two scientists discussed their finding on this ground-breaking research.
Rosa Rademakers, Ph.D., had to design a new test to find it. Bryan Traynor, M.D., Ph.D., went first to Finland and then to Wales to find it. They were both looking for the elusive gene on chromosome 9 that is now known to be the most common genetic cause of ALS. The two scientists discussed their independent discoveries after receiving the Sheila Essey Award from The ALS Association and the American Academy of Neurology. Dr. Rademakers is Associate Professor of Neuroscience, College of Medicine, Mayo Clinic, Jacksonville, Fla. Dr. Traynor is a neurologist and an Investigator at the National Institute on Aging (NIA), where he has been the Chief of the Neuromuscular Diseases Research Unit at the Laboratory of Neurogenetics since 2009.
Click here to read the full article.
ALS Association’s Drug Company Working Group Discusses Dexpramipexole, Tirasemtiv and Biomarkers
In March, The ALS Association convened its Drug Company Working Group to review recent trial results and discuss new developments in the search for treatments for ALS. The meeting was held during the Annual Meeting of the American Academy of Neurology in San Diego. The group comprises a rotating mix of representatives from industry, academic medicine, government research, and other disease-focused nonprofit organizations, all dedicated to developing new treatments for ALS.
Steve Gibson, Chief of Public Policy at The Association, provided the opening remarks and noted that there were significant opportunities for ALS including the National ALS Registry and the ALS Research Program at The Department of Defense. Lucie Bruijn, Ph.D., The Association’s Chief Scientist who organized the scientific program, noted that tremendous progress in understanding ALS has been made during the past two decades since the group first met, with new genes and new understanding of degenerative pathways now being explored for therapy development.
Click here to read the full article.
Celebrating Mom This Mother’s Day
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"We honor her not because she had ALS, but because she was much more to us," wrote Cheri Kopp, who chose to celebrate her Mom, by establishing an ALS Promise Fund. Every Promise Fund story is unique, but each captures the triumph of the human spirit.
Enjoy creating a personalized and enduring tribute to your mom this Mother's Day. Share her love, wisdom and all that she means to you and your family. Visit the ALS Promise Fund website to learn more.
Income for You and a Gift to Fight ALS
Whether you are already retired or planning now for future retirement, charitable gift annuities are a retirement planning tool worth considering. Here are the benefits to you:
Attractive Payment Rates. Charitable Gift Annuity rates continue to be extremely attractive. Rates depend on your age and whether the annuity is for one person or two.
Lower Your Taxes. Charitable Gift Annuities offer a tax deduction the year you make your gift and, in some cases, in subsequent years.
Receive Payments That Never Go Down. Your payments are based on your age at the time you make your gift. The payment rate is fixed and will never change regardless of market fluctuations or how long you live. And, your payments are guaranteed by the entire assets of The ALS Association.
Provide Income for Others. Charitable Gift Annuities are flexible and can be set up so that payments are to either one or two beneficiaries. They offer a creative way to use your assets to improve the long-term financial needs of a family member or special friend.
Leave a Lasting Legacy. A Charitable Gift Annuity to benefit The ALS Association will support compassionate patient care, research and advocacy in the fight against ALS.
If a gift annuity sounds right for you, contact us. We’re here to help.
