We know that participating in the Walk to Defeat ALS is no small feat and we’re in constant awe of how teams come together to help create a world without ALS. From walking to honor a loved one, to hope for a cure, each walker has their “why” that keeps them motivated and dedicated to the cause.
We asked Alberto Schirmer, a person with ALS and past Walk participant, why he walks and here’s what he had to say: [Read more…]
As ALS progresses, the needs of patients increase significantly and they find leaving their homes more and more difficult. The geography of Texas and accessibility of care are challenges for people with ALS. With the state’s sprawling cities, growing suburbs and vast rural areas, the nearest ALS clinic may be several hours away. Patient care clinics seek to solve this issue by housing all the doctors and medical professionals that an ALS patient needs to see in one place. These specialists work together to ensure that each patient receives high-quality, comprehensive care. This multi-disciplinary approach is scientifically proven to extend patients’ lives and improve their quality of life.
One of the goals of the ALS Association is to provide access to clinical care for all Texans living with ALS. Last year, we continued our investment in seven clinics across the state, watching them grow and serve more patients than ever before. We also formed new relationships with an additional three clinics. As we continue to partner and invest in these clinics, we will put them on the path to becoming Certified Centers of Excellence, which means more funding, more clinical trials and better resources for people with ALS. [Read more…]
On the weekend of June 28th and 29th, 95 fishermen from around the state gathered for the second annual ALS Fishing Classic in Port Mansfield, Texas- raising $39,174 for the fight against ALS!
The Classic is the brainchild of John Spiekerman and Harvey Hardwick- two lifelong friends who have both lost loved ones to ALS. The pair felt compelled to engage the Rio Grande Valley community in the mission of the ALS Association and together they made the first event a success!
For the Second Annual Classic we kicked things off with a Captain’s meeting over dinner and drinks on Friday night, and the first boat set sail before sunrise on Saturday. During Saturday’s dinner we presented our winners with awards like “Best Team Name” and “Largest Catch”. Congrats to our winners Clay Morgan, Jay Freedman, and Andy Gonzalez!
During the event we honored our Rio Grande Valley clinic. With your help we’ve been able to expand our clinics into more areas to reach those in need, including Rio Grande Valley. Our Rio Grande Valley clinic opened in October of 2017 at Doctor’s Hospital at Renaissance and has been serving local ALS patients ever since! Thank you to Dr. Khabbazeh and his team for everything they do.
A special thanks to the volunteer committee for their commitment to making the tournament a great success: Dan Baen, Harvey Hardwick, Shirley Holm, Edie Katsfey, John Spiekerman, Martin Spiekerman, Becky Spiekerman and Kitley Wasicek.
Stay tuned for information about the 2019 tournament at alsfishingclassic.com.
See more photos from the event here.
“ALS Hero” is a series focusing on highlighting notable PALS who have made an impact on their communities and the world at large.
Texas-born Eric Martinez would describe himself as a father, educator, doctor, mentor and friend. But in 2018 he added ALS patient to that list.
Nobody ever wants to be labeled as an ALS patient but I believe that through this terminal diagnosis, God is giving me a second chance at life.
Eric’s goal has always been to to inspire and prepare children of limited economic resources to succeed in school and lead their communities. He says “there is no greater gift than seeing a young student with few resources, achieve their full potential”. Eric taught his students to work hard and persevere because, after working tirelessly to earn his PHD, he knows what’s possible. “My ALS diagnosis has only helped me further model that example. I do not let the challenges ALS presents to me stand in the way of my life’s work”. Today, he mentors student teachers and interns at University of Texas Permian Basin and hopes to instill in them the same values he’s learned throughout his my career.
Speaking to the kindness of the ALS community, Eric went on to explain how a man, who’d recently lost his wife to ALS, had donated all of her medical equipment and accessible van to him in her honor. “His gifts have allowed for me to be independent, still work, and be a member of my community. I will never forget his kindness and will continue to pay it forward”.
Eric ended by sharing an important life lesson- “If there’s one lesson I have learned in my life, it’s that you can never give up. And even though ALS is trying to beat me, I’m going to keep pushing to be the best example I can be to my family, friends and students. It’s what I’ve always been called to do.”
We know that participating in the Walk to Defeat ALS is no small feat and we’re in constant awe of how teams come together to help create a world without ALS. From walking to honor a loved one, to hope for a cure, each walker has their “why” that keeps them motivated and dedicated to the cause.
We asked Sunny Erasmus, a person with ALS and past Walk participant, what she walks for and here’s what she had to say:
I walk to raise awareness for this disease. Raising awareness in order to influence those able to find a cure. A cure means hope for a future, children with my husband, and a life without this disease. I walk to join forces with my ALS community and show the world we’re here to fight.
Our team captain, Cindy, puts in large amounts of time and effort in order to engage everyone possible in our fight. After [the Walk] I feel loved, supported, and accomplished in our efforts.
– Sunny Brous Erasmus, diagnosed with ALS in 2015
What’s your why? What motivates you to keep walking? Email jacque@alstexas.org to share your story and inspire others, and register for your closest Walk today.
Dr. Stanley Appel, neurologist and co-director of the Houston Methodist Hospital Neurology Institute, has been leading the ALS Clinic at Houston Methodist Hospital since its founding in 1982. This was the first multi-disciplinary clinic dedicated to the treatment of and research on ALS. More than 35 years later, he continues to innovate in the field.
His latest research? An immunotherapy treatment that could stop the progression of ALS in its tracks. [Read more…]
Fort Worth local Colin Hadley is an ALS Hero and inspiring PALS who advocates for the rights of those living with ALS. Read his letter to his Senator, urging him to consider supporting life changing legislation that could improve the quality of life for many patients:
On October 24, 2014 I was given a death sentence…I was given a diagnosis of ALS for which there is no cure and there are no treatments to stop the disease. It isn’t a matter of IF I and other ALS patients will die, it is inevitably WHEN each of us will die.
That day I thought of things that I was looking forward to later in life that would never occur now, such as walking my daughter down the aisle on her wedding day, or playing with grandkids. I gave myself one day to be sad, mad, and bitter. The next day I said I was going to take advantage of the time I have left to make as many memories as possible with my family.
My family and I adopted a motto that we have lived by each and every day: ‘Don’t Count the Days…Make the Days Count’. We’ve done a great job making the days count with over 25 trips in 4.5 years.
There are 3 reasons why I could make those memories with my family and why I am still alive and able to speak to you today: [Read more…]
On June 9th-11th fourteen ALS advocates from Texas, along with our Executive Director and Sr. Director of Mission Delivery, made their way to Washington D.C. for ALS Advocacy Day. They joined 650 advocates from around the country to meet with lawmakers, share their ALS stories, and let members of Congress know why the time to act is now.
The ALS Association is at the forefront of public policy, working to improve the lives of people living with ALS and their caregivers. This year, our legislative priorities included:
In addition to these priorities, the ALS Association is working to identify achievable ways improve home health access for people living with ALS through regulatory and legislative action.
During Advocacy Day, our advocates had successful meetings with lawmakers like Joel Heimbach, Ted Cruz (pictured above), Veronica Escobar, Jodey Arrington and more and we couldn’t be prouder of the representation and strides made for people living with ALS.
In great news- Representative Veronica Escobar (pictured above) committed to sign the “Dear Colleague” letter to oppose the addition of noninvasive ventilators to the Competitive Bidding program and she committed to signing onto the bill to eliminate the SSDI 5-month waiting period for ALS patients. She also expressed interest in attending the ALS multidisciplinary clinic at Texas Tech Health Sciences Center in El Paso. Thank you Representative Escobar for your listening ear and for standing with us on these important issues!
In more great news- Texas advocate John Wynn (pictured above) also met with Congressman Kevin Brady. Congressman Brady made this statement about his meeting:
Moving visit last week from veteran John Wynn and ALS advocates. Thank you to the ALS Association of Texas for your work to improve the lives of individuals like Mr. Wynn who are living with ALS. Texas has 11 clinics across the state dedicated to research and patient care, including one at Memorial Herman in Houston. Thank you for sharing your story, Mr. Wynn. I’m proud to support ALS efforts in Congress.
Thank you Congressman Brady for standing with those living with ALS and supporting our efforts to make a positive change.
Our advocates did an amazing job speaking for their fellow PALS on Capitol Hill. Since our time in DC one-hundred more representatives signed our “Dear Colleague letter” urging the opposition of non-invasive ventilators, making the total an impressive one hundred and eighty signatures – a testament to our advocates who attended the conference or sent emails throughout the campaign.
The House Appropriations Defense Subcommittee also approved $20 million in fiscal year 2020 for the DOD ALS Research Program (ALSRP) – doubling the funding amount. This is a huge achievement in a program area that rarely sees increases of such magnitude, and it is a direct result of the advocacy of The ALS Association and our advocates.
Are you interested in inspiring change for those living with ALS? Become an advocate today!
In 2014, two men with ALS took it upon themselves to make a statement with simply a bucket, ice, and water. What started as a simple challenge quickly became a major movement that shed light on an often overlooked disease. Not only did the Ice Bucket Challenge spread awareness about ALS across the globe, it also generated $115 million for the ALS Association. There was nothing like the challenge before, and nothing like it since in terms of virality for a medical cause.
According to a report done by RTI, because of the Ice Bucket Challenge the ALS Association was able to increase our annual funding of research around the world by a staggering 187%- committing nearly $90 million around the world in research funding between 2014 and 2018. And since then we’ve been able to make major scientific advances (like discovering 5 new genes), expand care for those living with ALS (our clinical network saw a 50% expansion), and grow the federal government’s investment in disease research.
Five years after the Ice Bucket Challenge soaked the world, the pace of discovery has increased tremendously, bringing ALS researchers closer than they have ever been to real breakthroughs in diagnosing, treating, and eventually curing this disease. –Calaneet Balas, president and CEO of The ALS Association.
Locally, the Ice Bucket Challenge had a tremendous impact on The ALS Association Texas Chapter and has enabled us to expand our services across the state. As a result of the challenge, we’ve been able to provide $300,000 in financial assistance to people with ALS and their families, established eight new clinic partnerships to provide crucial multidisciplinary care for patients, and have connected with 1,530 new people with ALS since 2014. We’ve also been able to improve our equipment inventory in our loan closet, to ensure more people with ALS have access to the equipment they need without the financial burden.
We’ve made so many strides since 2014 and we couldn’t have done any of this without your help! The Ice Bucket Challenge was unlike any other social media movement in terms of spreading awareness for a disease and we’re so grateful for each and every person who participated and for everyone who continues to advocate for those with ALS.
The ALS Association is committed to providing transparency and a painting a clear picture of our fund-allocation. If you’d like to see how money raised from the Ice Bucket Challenge has been used take a look at our ALS Ice Bucket Challenge Commitments page. Interested in diving deeper into the progress we’ve made? Read the report and learn more about the impact of the Ice Bucket Challenge here.
We know that participating in the Walk to Defeat ALS is no small feat and we’re in constant awe of how teams come together to help create a world without ALS. From walking to honor a loved one, to hope for a cure, each walker has their “why” that keeps them motivated and dedicated to the cause.
Loraine, Texas native Jackie Barry is a mother, grandmother, and wife. And in February of 2016, after struggling for months with a progressively worsening speech problem, Jackie also became a person diagnosed with ALS. “I have entirely lost my voice and my arms and legs are slowly getting weaker and I will eventually lose the use of them also.” she says. Although she notes that ALS is always fatal and currently has no cure she still has hope for a world without ALS.
When asked why she participates in the Walk to Defeat ALS Jackie says:
Research is underway and ongoing to find a cure, which is being supported and funded by the ALS Association. The ice bucket challenge, together with the various Walks to Defeat ALS across the state have raised several million dollars toward research, development and aid to the victims of ALS and their families and care givers.
My family and friends have participated in the Austin Walk to Defeat ALS to help raise funds for research, patient care and the search for a cure for this dreadful disease. It is a great chance to meet other victims of ALS, their family and friends and the 3 walks we have participated in have been on beautiful days in a lovely setting and a lot of fun for everyone.
Jackie also noted how the ALS Association of Texas has helped her in navigating through life with as a newly diagnosed person with ALS. “Less than a week after I was diagnosed Jennifer Beckett, Care Services Manager with the ALS Association, reached out to us to come and visit with us, look at our home and evaluate what we may have to do to modify it to be accessible for me as my condition progresses.” Along with Jennifer, she also sang the praises of Regional Development Manager Michelle Miller who she says “works tirelessly and enthusiastically to raise awareness of ALS and is instrumental in coordinating the various fundraisers each year, especially the Walks.”
I have never known a more dedicated, helpful, compassionate and hard working group than everyone associated with the ALS Association Texas Chapter. I feel blessed to have met so many of them who are fighting endlessly to find a cure for this terrible, disabling and eventually fatal condition. Thank you for allowing me to speak out for myself and the numerous other people across the state who are suffering from ALS. Come join us to help work towards a cure for ALS.
-Jackie Barry
What’s your why? What motivates you to keep walking? Email jacque@alstexas.org to share your story and inspire others, and register for your closest Walk today.