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ALS Advocacy Conference Gives Hope and a Voice for People with ALS

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ALS Advocacy ConferenceJuan Reyes and his wife Meg attended the ALS Association Advocacy Conference in Washington, D.C. this May. 

My name is Juan Reyes, and I live with ALS. I was diagnosed in October 2015, but in hindsight, I started showing symptoms in late 2013.  What began as slight weakness in my left hand grip and thumb has progressed to severe weakness in all extremities and includes difficulty walking and loss of balance. I now use a motorized wheelchair to get around, and many facets of my life have changed because of ALS.  The big question, of course, is “Why me?” and “How did I get it?”

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What is ALS Advocacy?

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As you know, May is ALS Awareness Month, and this year, you will see a lot about advocacy and becoming an ALS Advocate.  We are often asked what exactly this means, so we prepared a brief Q&A to help you understand how you can make a difference!

What does Advocacy mean?

It means stepping up for those who can no longer walk, speaking up for those who have lost their voices, and sharing your ALS story.  While writing letters and meeting with members of Congress is part of this, all awareness is advocacy.  Anytime you share your ALS story, you are helping to bring greater awareness to the disease and reminding people why we need their help to create a world without ALS.

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Scientists Take Promising First Step in Accelerating ALS Diagnosis

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The Neurological Clinical Research Institute has recently made significant strides in working toward diagnosing ALS earlier and measuring the progression of the disease. The NCRI imaging team conducted its first successful PET imaging scan of a person living with ALS to measure inflammation in the brain, which is a promising first step in the TRACK ALS imaging biomarker study.

Dr. Nazem Atassi and his team at Massachusetts General Hospital developed a tracer that binds to support cells of the nervous system in the brain. The tracer serves as a marker of inflammation and tracks changes in the cells of the nervous system. The PET imaging scans measure inflammation in the central nervous system, where cells move to the already damaged area of the brain and worsen damage by further harming neurons.

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ALS Texas: 2015 by the Numbers

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At ALS Texas, we’re dedicated to serving people with ALS in any way we can. That includes running clinics, hosting support groups, providing grants, loaning equipment, funding research, educating people about ALS, and much more.

It’s only through the support of people like you that we’re able to do all this, and we want to thank you for helping make the past year a success. By almost any measure, 2015 was a banner year, with ALS Texas providing more services to more people—about 13% more, compared to 2014. Here’s a look at the numbers that help show what we were able to accomplish:

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What Would You Do with an Extra Day of Life?

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Today is February 29, or what’s more famously known as Leap Year Day. It’s basically our human attempt to even things out by piecing together scraps of time from the past into one additional day every four years. An extra 24 hours, how great is that! It’s even better than gaining an extra hour of sleep every November when Daylight Saving Time ends.

If you’ve never been impressed by the concept of Leap Year Day, perhaps now is the time to start viewing it as a bonus to be spent on doing something special. Some people write themselves letters (or have their children write letters to themselves) and read them in four years to see what’s changed. Others set aside the day to do a special project they have been putting off. Some of us plan to make a $29 donation to our favorite charity. Regardless of the act, the idea of doing something unique in honor of this extra day has merit.

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Calling All Texas Advocates for the 2016 National ALS Advocacy Day & Public Policy Conference

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National ALS Advocacy Day 2016
In 2015, The ALS Association of Texas took its largest contingency of advocates ever to Washington, DC to lobby congressional leaders to make ALS research and services to people living with ALS a priority. If you’ve never before participated in this important and powerful event, we are pleased to announce that registration for the 2016 National ALS Advocacy Day & Public Policy Conference is officially open!

Held this year from Sunday, May 8 through Tuesday, May 10, in Washington, DC, National Advocacy Day is a great opportunity to share your story with Washington, DC legislators as well as other advocates. Registration is open to everyone, so don’t let this opportunity to have your voice heard pass you by.

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ALS BrainStorm Stem Cell Clinical Trials Update

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JAMA Neurology has published a paper titled, “Safety and Clinical Effects of Mesenchymal Stem Cells Secreting Neurotrophic Factor Transplantation in Patients With Amyotrophic Lateral Sclerosis – Results of Phase1/2 and 2a Clinical Trials.” This study comes out of a collaboration of researchers from BrainStorm Cell Therapeutics and the Hadassah-Hebrew University Medical Center both located in Israel.

The researchers set out to understand the safety and clinical effects of treatment with mesenchymal stem cells induced to secrete neurotrophic factors (MSC-NTF) in patients with ALS. Stem cells used in this study are adult mesenchymal stem cells derived from bone marrow samples given by participants in the trial. The bone marrow cells are turned into stem cells that secrete the NTFs. NTFs are a type of nutrient for cells and were previously shown to have protective effects in animal models of neurodegenerative disease.

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ALS Association Awards $1.3M to 9 New ALS Research Projects

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We are excited to announce funding for  nine new ALS research projects! The ALS Association awarded more than $1.3M to projects across the country, furthering investigation into the cause, treatments and cure for ALS.  Projects include research on the C9orf72 gene, which has been identified as the most common cause of familial ALS.  The research awards include ALS Association-Initiated Grants, Investigator-Initiated Biomarker Grants, and the Milton Safenowitz Postdoctoral Fellowships.

To learn more about these research grants and initiatives, visit alsa.org.

Why We Walk

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The Walk to Defeat ALS is an annual fundraiser with one goal in mind: help create a world without ALS. Since its inception 15 years ago, the Walk to Defeat ALS has raised over $215 million to help fund research and provide services and support to people affected by ALS.

But the walk isn’t only about raising money. It’s about showing support to family and friends. It’s a chance to come together as a community, standing up for a common cause. It’s a way to show how much you care.

We walk for many reasons; here are just a few examples.

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Why We Need the ALS Ice Bucket Challenge

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Trece Porrata - Why We Need the ALS Ice Bucket ChallengeGuest post by Trece Porrata, a patient with ALS

My husband was challenged to do the Ice Bucket Challenge last year when we were visiting friends in Port Aransas with our kids. As he was filling the bucket with ice, he jokingly asked me, “Wait, what am I doing this for?” I replied, “ALS, silly!” realizing that I didn’t actually know what it was.

Quickly, I went into the house to do some research about ALS. I ended up on the ALS Association of Texas website, reading through ALS symptoms. As I went down the list — muscle weakness, fine motor control issues — I noticed that I had been experiencing some of those same symptoms lately. But I didn’t think much of it at the time — after all, ALS is a man’s disease, right? And we had an Ice Bucket Challenge to complete. I went back outside to tell my husband what ALS was, and moments later I was laughing at his reaction to the freezing water, handing them towels and forgetting all about my symptoms.

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