ALS Texas

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…]

Advocates take to Capitol Hill to Inspire Change

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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.

Sr. Director of Mission Delivery Steve Morse with Texas advocates Mike and Linda

Our Priorities

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:

  1. Passing the ALS Disability Act to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance
  2. Preserve and increase federal resources for ALS Research through the Department of Defense, National ALS Registry, and National Institutes of Health
  3. Oppose competitive bidding for noninvasive ventilators, a critical life support for Medicare beneficiaries with ALS

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.

Our Impact

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!

Why The Five-Month SSDI Waiting Period For People With ALS Needs to Be Eliminated

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Pictured: Mary Johnson, Caregiver

Last week the ALS Disability Insurance Act was reintroduced in the 116th Congress. The bill (S.578) aims to eliminate the five month waiting period for disability insurance benefits for those with ALS.

Because of the nature of ALS, and how rapidly symptoms can arise and progress, people with ALS simply do not have five months to wait. They deserve their benefits, that they earned, immediately. Mary Johnson, a caregiver from Pennsylvania whose family has the genetic form of ALS, has lost 14 family members to the disease. One of those family members, her niece, passed away only four months after her diagnosis.

“Over the course of a five-month waiting period, people living with ALS will have only experienced progressive loss of function and will have incurred significant expenses for care and treatment,” said Calaneet Balas, president and CEO of The ALS Association. “We urge Congress to pass this legislation and remove the arbitrary five-month waiting period that creates an unfair financial burden on people whose life expectancy is so tragically abbreviated.”

Because of advocacy from our community, last year the bill was introduced and gained traction. Seven months later, for the first time ever, the bill was unanimously considered for passage through the senate. We have hope that this bill can pass, and we need your help to make it happen!

Ask your members of Congress to cosponsor this bill today to keep the momentum going!

Also tweet or share your support on Facebook, in order to spread the word. Together we can make a difference for people with ALS.

Tweet Your Support!

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ALS Advocacy in Glasgow: One Advocate’s Experience at the 29th International Symposium on ALS/MND

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On December 4th, 2018 ALS Advocate Sunny Erasmus  joined scientists, health care professionals, and other fellow PALS as they made their way to Glasgow, Scotland for the 29th international symposium on ALS/MND. During the 5-day symposium attendees and speakers shared information on the latest research, discussed future collaborations, and had discussions about patient care services. The ALS Association was also in attendance, joining other members of the International Alliance of ALS/MND Associations to exchange information about the care and support of people with ALS/MND everywhere.

Here’s a short summary of some of the panels Sunny attended during her three days in Glasgow: [Read more…]

How Sunny Erasmus is Raising Her Voice for ALS

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Since being diagnosed with ALS in 2015, right before her 28th birthday, Sunny Erasmus has become a warrior for others with the devastating disease. “There are many things that ALS has taken away from me”, she says, “but my voice is loud and persistent in the fight to end this disease”.

In May of 2018 she was one of 570 ALS advocates who made their way to Washington DC for the National ALS Advocacy Conference. There, people with ALS, their friends, and their families were able to make their voices heard and speak up for those who no longer can.

Twenty-two Texans traveled to Washington, D.C., in May to attend the National ALS Advocacy Conference.

At the conference advocates like Sunny learned about the latest ALS research, care service programs, and advocacy efforts to prepare them for meetings with Texas congressional staff and representatives. During those meetings advocates fought for public policy initiatives that would improve the lives of people with ALS, including:

  • Ensure at least $10 million in appropriations for the ALS Registry at the Centers for Disease Control (CDC).
  • Ensure at least $10 million in funding for the Department of Defense’s (DOD) ALS Research Program.
  • Support increased funding for the National Institutes of Health (NIH) in FY2019, especially in the National Institute of Neurological Disorders and Stroke (NINDS).
  • Pass the ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance.
  • Educate and influence Congress and Administrative officials to remove complex barriers to Medicare home health benefits for people living with ALS.

Sunny called the conference one of the most impactful experiences of her life, where she learned about what it means to be an advocate, what to advocate for, and the progress that’s being made by other ALS advocates along the way. “Keeping up energy and focus is hard”, she says, “but advocating for my fellow ALS soldiers has sparked a fire in me that will never go out”.

It’s advocates like Sunny that spark energy to create change in public policy and beyond. Interested in becoming an advocate? Sign up today!

 

Texans Travel to Washington, D.C., to Advocate for People with ALS

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Twenty-two Texans traveled to Washington, D.C., in May to attend the National ALS Advocacy Conference.

More than 570 ALS advocates from across the country joined together for the 2018 National ALS Advocacy Conference in Washington, D.C., on May 13-15. Nearly every state in the country was represented, with 22 advocates hailing from Texas.

Stacey Crowder was one of the Texans who went to D.C. to advocate for People with ALS. Stacey was diagnosed with ALS on August 11, 2016. He’d first noticed a slight twinge in his left bicep earlier that year, and when he received an ALS diagnosis, it took him and his family on an emotional roller coaster. At first, Stacey was devastated and scared, but he was able to cope by relying on his spirituality and the support of his friends and family.

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First Recipient of Harrison Brown Volunteer of the Year Award Honored at the Austin Walk

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Whitney Sadler is the first recipient of the Harrison Brown Volunteer of the Year award.

We had the privilege of awarding the first Harrison Brown Volunteer of the Year award to Whitney Sadler at the 2017 Austin Walk to Defeat ALS.

The award honors the late Harrison Brown who lost his life in the stabbing at the University of Texas in May 2017.

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ALS Camps Provide Hope, Help Kids Cope

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Although children and teens are very unlikely to develop ALS, that doesn’t mean they aren’t affected by the disease. 85% of people who do have ALS report having children or grandchildren who are directly impacted. Coping with a parent or grandparent’s ALS diagnosis is never easy, but it is especially hard for children, who don’t have the same emotional maturity as their adult counterparts. Becoming a caregiver for someone is a difficult transition to make when you’re used to having that person take care of you. And since it’s unlikely that any of a child’s friends would have experience dealing with ALS, it can leave them feeling alone, with no one to really talk to.

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Update: SUCCESS! Help Teach Siri About ALS Awareness

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Updated on 5/11: We did it! Thanks to your overwhelming support in petitioning Apple, Siri was updated in less than 24 hours. Now asking Siri, “What is ALS?” brings up the following definition:

“Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease and motor neuron disease (MND), is a specific disease that causes the death of neurons which control voluntary muscles.”

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Make a Difference This May

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May is ALS Awareness Month!

Awareness is critical to our goal of ending ALS forever. The more people know about ALS, the more they get involved, and the more they support ALS advocacy and research. Through that support, we’ve made great strides toward finding potential treatments for ALS.

But we need your help to spread the word and keep the momentum going! It’s people like you who make everything we do possible. Here are a few ways you can take part in ALS Awareness Month:

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