ALS Texas

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

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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

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

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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…]

“We Walk For A Cure” – Jackie’s Story

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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.

Register for Your Nearest Walk

ALS Hero: Pete Frates

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“ALS Hero” is a series focusing on highlighting notable PALS who have made an impact on their communities and the world at large.

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.”

While Pete didn’t quite get his billion, he did raise a staggering $220 million for ALS through the Ice Bucket Challenge he kicked off in 2014.

After watching his friends do silly challenges on social media, he 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 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 for ALS.

It’s been nearly 7 years since Pete’s diagnosis, and in the years since he’s continued to champion for those with ALS, including raising money to start a fund to help with costly caregiver fees. He’ll also be the subject of an upcoming Casey Affleck-produced Netflix film detailing his life and the challenge he created that changed the lives of many.

Thank you Pete for everything you’ve done to progress ALS research and bring us closer to a cure! You are truly an #ALShero.

“I have ALS, but it doesn’t have me.” – Collin’s Story

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After being diagnosed with ALS in October of 2014, Collin Hadley gave himself one day to be frustrated, only one, before declaring “I have ALS, but it doesn’t have me.” 

Since that day Collin and his family have set out to make as many memories as possible, including 25 family trips, fundraising for ALS, finishing the Cowtown half marathon (in a neon pink stroller), and more. Although Collin strives to be positive he recognizes that not every day is easy. He says, “Though not visible on a daily basis, every month for the rest of your life is a little more difficult than the one before.”

Even in the face of ALS, Collin has continued to grab life by the horns with the help of the ALS Association of Texas. “When I had my first falls with this disease, they got a hoyer lift in my home immediately.  When it was no longer safe for me to stand up in the shower, they had a shower chair sent to me that day. When I could no longer get in the swimming pool with my kids, they found me a pool lift.” He went on to describe how an ALS Association representative made a 4.5 hour drive to deliver a power wheelchair to his hotel room when he was on vacation. “The ALS Association staff and volunteers have dedicated their lives to ensure that those living with ALS today can continue to live life and make memories”.

Collin stresses the importance of having a community of heroes to help people with ALS navigate through life- “This terrible disease takes a village, and thankfully the one many of you have built for me and my family is rock solid.”

Interested in becoming an ALS hero for people like Collin? Donate today!

ALS Hero: Steve Gleason

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Photo Credit: @teamgleason on Twitter

“ALS Hero” is a series focusing on highlighting notable PALS who have made an impact on their communities and the world at large.

In 2006 Steve Gleason was responsible for one of the most notable moments in New Orleans Saints’ history- his blocked punt in the Louisiana superdome, which had opened for the first time since Hurricane Katrina. Less than five years later, in 2011, Steve was diagnosed with ALS.

Since then, Steve has become an unwavering advocate for fellow PALs. Thanks to his push for technological advances to help those with ALS, Microsoft developed power wheelchairs that could be controlled via eye-tracking software. This is an amazing feature for people who have become weakened or paralyzed by the disease. Besides pushing for better tech Steve is also heavily invested in progressive research, holding the world’s largest coordinated and collaborative ALS research project in 2014. In 2016 his documentary “Gleason”, detailing his life with ALS, premiered at that year’s Sundance Festival to critical acclaim.

Now, our ALS Advocacy team is working with others to help secure Steve Gleason the Congressional Gold Medal. After all Steve has done to spread awareness and help his fellow PALS around the world, we think it’s well deserved! Want to assist us in this effort? Contact your House leader to request they sign on as a co-sponsor. Learn more here: https://www.honorgleason.com/contact

Interested in helping us in our mission to create a world without ALS? Donate today!

ALS Can Never Steal the Joys of Motherhood

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In 2001, Patricia and Oran Hamilton welcomed their son Patrick into the world. As Patricia started this new chapter in her life, she knew that she wanted to cherish every moment of motherhood. Over the years, she watched as her son grew, encouraging his love of learning.

When Patrick was 11, Patricia started experiencing weakness in her hand, and went to a neurologist who gave her three different diagnoses. In March 2014, she was finally diagnosed with ALS.

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New Salsa Business Provides Purpose After an ALS Diagnosis

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skips-salsa
Tami Potts has been canning her homemade salsa since her 20s.

Tami Potts has been canning her homemade salsa since her 20s. People have always told her that she should start her own salsa company, but between raising four kids and working, she never had much time to pursue that opportunity.

In the summer of 2016, Tami’s right hand started going numb. Her doctor told her it was time to consider another profession, as she spent many long days as a mail carrier. Tami’s daughter suggested finally starting up that salsa business.

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Support Plays Important Role in Living with ALS

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By Ben Stephens

Ben and his family

Like most people with ALS, I’d noticed some changes long before the diagnosis came. In August 2013, I began having difficulty buttoning my shirt. After seeing three different neurologists, receiving an incorrect diagnosis of multifocal motor neuropathy, and a series of tests like a spinal tap and MRI, I finally received a diagnosis of ALS in December 2014.

ALS has forced a lot of changes on my life. As an estate planning and probate attorney, I have a number of clients who rely on me. After my diagnosis, I hired an associate, which allows me to continue to work while living with the realities of ALS. I quit driving about two years ago, and I’ve learned to work remotely. I had to sell my house because of the stairs, and my family and I moved to a duplex. ALS has affected almost every area of my life.

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Austin Family Grateful for Outstanding Support on Their ALS Journey

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By Jackie Barry

Jackie Barry lives with her husband Tom in Austin, Texas. She was diagnosed with ALS in 2016 and has been involved with the ALS Association since then. Read her story below.

In early 2015, I began having a speech problem, like a lisp, which seemed to get a little worse when I was stressed or tired. We were in the midst of getting home repairs done, so I thought it would just go away if I ignored it.

In August that year, I saw the doctor about it, and he suspected it could be a stroke or a brain tumor, among other things. I had an MRI, MRA and a carotid sonogram done, which all came back normal. Shortly after that, I was referred to a neurologist, who sent me for a swallow test, after which he believed it was a neuromuscular problem. He then referred me to Dr. Carlayne Jackson at UT Health in San Antonio. Dr. Jackson diagnosed me with ALS in February 2016.

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