In 2018 we set out with the goal to spark hope, ignite action, and inspire others to join us in the fight to create a world without ALS. And it was thanks to our wonderful community that we were able to achieve that goal. Throughout the year we provided patient services, hosted community events, and helped fund life-changing research to find new treatments for this devastating disease.
In July 2016, the ALS Association of Texas welcomed Jessica Welch as the organization’s first Regional Director on its statewide team. Tasked with leading the full mission of the ALS Association in the Greater Houston and East Texas region, her leadership in this new role has catapulted the Chapter forward in achieving its mission.
Thanks to this new on-the-ground leadership in the region, the team in the Houston office has a greater sense of ownership of their work and a renewed passion for ensuring they successfully meet the needs of those living with ALS in the region. And the results are evident with improved communications and team cohesiveness among the care services, fundraising, and operations functions.
Caregivers of people with ALS are crucial in the care of their loved ones battling this disease. Being the primary caregiver for a loved one with ALS can be stressful – not only are you on call 24/7, but you may have additional outside responsibilities, like working a full- or part-time job or caring for additional family.
ALS caregiver Trixie Stanford was honored at the Gordon Hartman Family Foundation‘s 2nd Annual Excellence in Caregiving Awards in April. A Belton resident, Trixie serves as the primary caregiver for her son Charlie.
New Regional Director Joins North Texas Team
Since it’s official formation in early 2012, The ALS Association of Texas has seen an exponential increase in the number of Texans with ALS that it is assisting. Along with that growth came the increasing challenge of ensuring that the chapter was best positioned and resourced to provide people in every corner of the state access to ALS clinics, support groups, loaned medical equipment and other resources to live with ALS.
To that end, last year the chapter began developing a staffing structure that went beyond the traditional department-focused organizational chart to something that would provide for on-the-ground leadership in each of its three regions serving ALS patients and their families within Texas.
May is ALS Awareness Month. For the next 31 days, we will be dedicated to education about ALS and the important work we’re doing to find treatments and a cure. This month is also dedicated to advocating for people with ALS and their caregivers.
This year, Raise Your Voice to bring awareness to ALS. Even if you’re a person with ALS who has lost the ability to speak, you still have a voice. You can increase ALS awareness by sharing your personal story on social media, writing letters to members of Congress, donating to our mission, and using speech generating devices and sign language to talk to people about the issues people with ALS face every day.
By Guillermo Garcia
My name is Guillermo Garcia. I am from San Antonio, Texas, and I was diagnosed with ALS in November 2015. It was ironic, because in August of 2014 we saw the Ice Bucket Challenge explode. Prior to that, we didn’t really have any knowledge of ALS and didn’t personally know anyone who had it. A group of us got involved in the challenge with my daughter’s softball team, and we started challenging everyone to do it. But we still didn’t really have a good idea of what it was.
In October of that year, my wife asked if I’d noticed that I had some twitching going on. I hadn’t until she pointed it out. We waited about a month to see if it would go away, but it didn’t. It just so happened that at the time, I was also having some issues with what we thought was carpal tunnel. I told my doctor about the twitching and was referred to a neurologist for some tests. I was diagnosed with ALS in November 2015, a year after initially noticing symptoms.
We are pleased to announce the addition of a fifth ALS multidisciplinary clinic in Texas. The Rio Grande Valley clinic opened on Friday, October 27 at Doctor’s Hospital at Renaissance in Edinburg, Texas. Headed by neurologist Zuka A. Khabbazeh, MD, the team met with and treated five patients on opening day.
After 46 years of teaching, Lois Albright retired, and she and her husband moved from their home in Brenham, Texas to Austin to be closer to family. Her daughters had been encouraging her to retire for many years, but she loved to teach.
“People who retire just get sick or have bad things happen to them,” Lois would say in response.
Just a few months after she retired, Lois was diagnosed with ALS in February 2017 – on Valentine’s Day.
Who would’ve thought?
Based on information as of 5/5/2017
What is Radicava?
Radicava™ (edaravone) is a prescription medicine approved by the U.S. Food and Drug Administration (FDA) to treat people with amyotrophic lateral sclerosis (ALS).1
In clinical trials, some people given Radicava showed significantly less decline in physical function compared to placebo as measured by the ALS Functional Rating Scale-Revised (ALSFRS-R), a validated rating instrument for monitoring the progression of disability in patients with ALS.1,2
Radicava is First Approved Treatment for ALS in Decades
The Food and Drug Administration’s (FDA) announced today that it has approved Radicava (edaravone), the first new treatment approved specifically for ALS in 22 years. The FDA approved Radicava less than a year after Mitsubishi Tanabe Pharma Corporation submitted a New Drug Application. The only other approved treatment specifically for ALS, riluzole, was approved in 1995.
“We thank the FDA and MT Pharma for working together to expedite the approval of the first new ALS-specific treatment in decades,” said Barbara Newhouse, president and CEO of The ALS Association. “We hope today’s announcement signals the beginning of a new chapter in the fight against this terrible disease. There are several drugs to treat ALS currently in clinical trials and we are hopeful that people living with ALS have even more therapies available to them sooner rather than later.”
