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  • Understanding ALS
    • ALS Symptoms
    • Stages of ALS
    • What Causes ALS?
    • Lou Gehrig and the History of ALS
    • ALS Glossary
  • Who We Are
    • What We Do
    • Our Leadership
    • Financial Information
    • Our Partners
    • Careers
  • Research
    • How ALS Patients Can Help
    • Research Resources
    • Research News
    • ALS Association Research
  • Navigating ALS
    • Newly Diagnosed
      • What Do I Do Now?
      • How to Share Your Diagnosis
      • Second Opinions
      • Resources
      • Clinics and Centers
    • Living with ALS
      • For Patients
      • Therapies & Care
        • Nutrition & Feeding Tubes
        • How to Improve Mobility
        • Dealing with Breathing Issues
        • Dealing with Speech & Swallowing Issues
        • Types of Assistive Equipment & Technology
        • Clinics and Centers
      • Living Setting
      • Daily Living Activities
      • Leisure Activities
      • Accessible Vehicles
      • More in Depth Resources/Manuals
    • Coping with ALS
      • Dealing with Anxiety/Depression
      • Changes in Thinking & Emotional Lability
      • Support Groups
      • Resources
    • For Caregivers
      • Caregiver Program
      • Caregiver Resources
      • Practicing Self Care
      • From One Caregiver To Another
    • For Youth & Children
    • Virtual Support Groups & Workshops
      • Past Virtual Event Recordings
    • Resources
      • Healthcare/Insurance
      • Hospice & Palliative Care
      • Finances/Employment
      • Taxes
      • Advance Directives
      • More in Depth Resources/Manuals
      • Register with ALS Texas
  • Get Involved
    • Walk to Defeat ALS®
      • Register for a Walk
    • Texas Chapter Events
      • Houston Marathon and Half Marathon
      • All In For ALS Poker Tournament
      • Sporting Clay Shoot
      • Under Ballou Skies Golf Classic and Party
      • ALS Fishing Classic
      • The Cowtown Affair
    • Calendar of Events
    • Fundraising Opportunities
    • Ways to Give
      • Corporate Partnerships
      • Workplace Giving
      • Community Giving Programs
    • Volunteer
    • The ALS Ice Bucket Challenge
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ALS Hero: Pete Frates

December 9, 2019 by Jacque Amadi 4 Comments

In college Pete Frates was an all-star athlete, becoming the captain of Boston College’s baseball team and hitting a monster home run in Fenway Park in his final year. A few years later, on March 13th 2012, Pete was diagnosed with ALS.

Almost immediately after hearing the diagnosis Pete took the news as a challenge, asking his doctor “how much money do you need to cure this thing?” After hearing “one billion dollars”, Pete’s immediate response was- “I will get you a billion dollars.”

After watching his friends do silly challenges on social media, he and others affected by ALS came up with a simple idea – dumping ice water on yourself and encouraging friends to do the same to raise money for ALS. Although ALS was a relatively unknown disease, Pete had quite the network of friends – including athletes with large social media followings. Soon the Ice Bucket Challenge spread like wildfire. In the weeks and months after, celebrities like Lebron James, Oprah Winfrey and Bill Gates joined in, all to raise awareness and funds for ALS.

The Ice Bucket Challenge raised a staggering $220 million for ALS nonprofits, putting him well on his way towards raising one billion dollars.

It’s been 7 years since Pete’s diagnosis, and in the years since he’s continued to champion for those with ALS. His family said it best: “He was a beacon of hope for all.”

Pete passed away on December 9, 2019 at the age of 34, but his legacy will live on as a hero for people living with ALS. Thank you Pete and the Frates family for everything you’ve done to progress ALS research and bring us closer to a cure.

Filed Under: Ice Bucket Challenge, Inspiring PALS, Stories Tagged With: alshero

ALS Association Awards Joint Grant to Help Fund Houston Neurologist’s Groundbreaking Research

November 5, 2019 by Jacque Amadi Leave a Comment

The ALS Association, ALS Finding a Cure (ALSFAC), and MDA have jointly awarded a $2.5 million clinical trial grant to Dr. Stanley Appel and his team of researchers at the Houston Methodist Neurological Institute, and Dr. Merit Cudkowicz and his team at Massachusetts General Hospital.

The funding award will allow Dr. Appel to expand the first-in-human study that demonstrated promising results leveraging patients’ own immune cells to treat ALS. [Read more…]

Filed Under: Research

“We Walk For Our Community” – Juan’s Story

October 23, 2019 by Jacque Amadi Leave a Comment

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 Juan Reyes, a person with ALS and past Walk participant, to share his story and why he walks. Here’s what she had to say:

Tell us a little about yourself.

My name is Juan Reyes, and my wife Meg and I are from Del Rio, Tx, where we met in high school. A year after marrying we were moved to Greece by the Air Force. During my 21 years of service we had assignments in Texas, Greece, United Kingdom,  Maryland and numerous temporary duties. Meg and I settled in San Antonio after my retirement from Service with our four children.

What is your connection to ALS?

I am inextricably connected to ALS due to being diagnosed with the condition on Oct 14 2015. This day forever altered our family’s life. Since that day, our family has been living with ALS and its impact on us all. One of the most difficult things Meg and I have done is tell our children and family of my diagnosis.

[Read more…]

Filed Under: Walk to Defeat ALS

“We Walk to Fund Research” – Alberto’s Story

August 5, 2019 by Jacque Amadi 1 Comment

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…]

Filed Under: Inspiring PALS, Walk to Defeat ALS

Multidisciplinary Clinics Open Up Access to Care for ALS Patients

July 24, 2019 by Jacque Amadi Leave a Comment

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…]

Filed Under: Uncategorized

Fishermen Raise $39,174 While Casting a Line for ALS

July 12, 2019 by Jacque Amadi 1 Comment

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.

Filed Under: Fishing Classic, Fundraising

ALS Hero: Eric Martinez

July 8, 2019 by Jacque Amadi 1 Comment

“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.”

Filed Under: ALS Hero

“We Walk For ALS Awareness” – Sunny’s Story

July 1, 2019 by Jacque Amadi 1 Comment

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.

Register for Your Nearest Walk

Filed Under: Inspiring PALS, Walk to Defeat ALS

Houston Neurologist Discovers Treatment That Could Halt the Progression of ALS

June 28, 2019 by Jacque Amadi 65 Comments

Research Study Information and Photos Provided by Methodist Houston Hospital

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…]

Filed Under: Research, Research News

ALS Advocacy in Action: Collin’s Letter to His Senator

June 26, 2019 by Jacque Amadi 4 Comments

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…]

Filed Under: Advocacy, Inspiring PALS

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