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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…]

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…]

ALS Advocacy Conference Gives Hope and a Voice for People with ALS

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ALS Advocacy ConferenceJuan Reyes and his wife Meg attended the ALS Association Advocacy Conference in Washington, D.C. this May. 

My name is Juan Reyes, and I live with ALS. I was diagnosed in October 2015, but in hindsight, I started showing symptoms in late 2013.  What began as slight weakness in my left hand grip and thumb has progressed to severe weakness in all extremities and includes difficulty walking and loss of balance. I now use a motorized wheelchair to get around, and many facets of my life have changed because of ALS.  The big question, of course, is “Why me?” and “How did I get it?”

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What is ALS Advocacy?

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As you know, May is ALS Awareness Month, and this year, you will see a lot about advocacy and becoming an ALS Advocate.  We are often asked what exactly this means, so we prepared a brief Q&A to help you understand how you can make a difference!

What does Advocacy mean?

It means stepping up for those who can no longer walk, speaking up for those who have lost their voices, and sharing your ALS story.  While writing letters and meeting with members of Congress is part of this, all awareness is advocacy.  Anytime you share your ALS story, you are helping to bring greater awareness to the disease and reminding people why we need their help to create a world without ALS.

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Calling All Texas Advocates for the 2016 National ALS Advocacy Day & Public Policy Conference

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National ALS Advocacy Day 2016
In 2015, The ALS Association of Texas took its largest contingency of advocates ever to Washington, DC to lobby congressional leaders to make ALS research and services to people living with ALS a priority. If you’ve never before participated in this important and powerful event, we are pleased to announce that registration for the 2016 National ALS Advocacy Day & Public Policy Conference is officially open!

Held this year from Sunday, May 8 through Tuesday, May 10, in Washington, DC, National Advocacy Day is a great opportunity to share your story with Washington, DC legislators as well as other advocates. Registration is open to everyone, so don’t let this opportunity to have your voice heard pass you by.

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ALSA TX Goes to Washington: Advocacy Day 2015

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We attend the Public Policy and Advocacy Conference every year, and it’s always such an amazing time. PALS and their supporters and loved ones get to talk directly to the staffers and congressional leaders who shape our nation’s policies, promoting increased funding for ALS research, and gathering support for laws and regulations that affect the daily lives of people with ALS.

ALSA TX Advocacy Day 2015_3

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Walk to Defeat ALS: Team Queen Bee

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Monica McHam was diagnosed with ALS in 2021. She must now use a wheelchair and has lost the use of her voice, but Monica’s mind remains as sharp as ever. She is completely paralyzed on the right side but was able to type her story using two fingers on her left hand.

These are her words, and this is her story.

I am 66 years old.  I was born into a large family in Cincinnati, Ohio.  I am married to my heaven-sent husband, Mick McHam; we are celebrating our 27th wedding anniversary. We have no children, but between us we have 18 nieces and nephews, and they are all busy populating the next generation.

For as long as I remember, I knew I would see the world.  After one year of college, I enlisted in the US Army (to begin seeing the world).  I had my 19th birthday in basic training.  I was in the army for not quite eight years, and I was stationed at three different bases in Germany.  Because of Germany’s central location and with 30 days paid leave per year, I got a great start on seeing the world. I travelled throughout Europe, Iberia, Scandinavia, Greece, Turkey, and parts of Africa.

In the years Mick and I have been together, we have travelled thousands of miles here in America.  It is a country filled with history, natural beauty, and wonderful people.

I finished college when I got out and later went to law school, both at the University of Houston. I lived in Houston for about 35 years and moved to Weatherford in 2018.

I was diagnosed with bulbar onset ALS, voice affected first, on April 6th, 2021.  I began seeking medical help in October 2020.  I had begun to slur my speech occasionally.  I sought help from a local ENT, who insisted my problem was acid reflux.  I could/did not believe him.  To humor me, he sent me for speech therapy, and many tests.  None of which confirmed or countered his diagnosis.   As a last resort, he sent me to a local neurologist. By now it was March 2021.

The neurologist recognized the problem immediately; he talked briefly about ALS and referred me to the neurology specialist at UT Southwestern.  I had multiple tests there to eliminate other diseases.  There was no other possibility, I had ALS.   During our initial discussion with the doctor at UTSW, she noted that in women over 65 with bulbar onset, ALS progresses rapidly.  I thought ‘not me.  I’m special.’

In a year and a few weeks, I have gone from fully functional to wheelchair bound.  I cannot walk, talk, hold a book, brush my teeth, bathe myself, dress myself, or leave the house for more than a few hours. My pulmonary function is down to 43 percent. All my water, nutrition, and medication are injected through a feeding tube. My right side is totally paralyzed, my left leg is weakening, and I have two functional fingers on my left hand.

Although we have a part-time home health aide, Mick is my primary caregiver.  He is a geologist, and like any good scientist, he immediately dove in getting the facts and learning   about this wicked disease. He found the ALS Association of Texas, multiple ALS forums, identified the equipment we would need, and got lots of help from them all.  He still goes back for help as my disease progresses.

When I told my siblings about my ALS diagnosis, they were appropriately horrified.  My younger sister, Patti Hill, is amazingly proactive.  The day after I told her about my diagnosis, she had gone online and learned a ton of good information about ALS.  She had found the ALS Association of Texas, signed up a team, put the walk and request for donations on FB.  She is our team leader…an obvious choice.

My parents and one brother have passed away. So now I have two sisters and three brothers, we are scattered across four states. Even at a distance my siblings shower me with love, cards, and visits. Several of them came to Dallas last year to walk with us.  The rest walked in their hometown.

The team name, Queen Bee, is a nod to my eye-smacking yellow wheelchair.  When I was being fitted for it, they asked me what color I wanted, noting the reds were quite popular.  I still thought I was ‘special’ so red wasn’t going to cut it.  The yellow popped out.  Mick said, ‘yellow and black, she’ll be the queen bee.’  Shortly afterwards he got bee stickers and plastered them strategically on my chair.

Patti, being the great team leader, got me a QUEEN BEE t-shirt, Mick a HUBBEE t-shirt, and the rest of the team members WORKER BEE T-shirts.

I walk because:  I want the world to know what ALS is.  Like me before diagnosis, the average person may have heard of Lou Gehrig or Steven Hawking, but that’s it.  I want the world to know and understand what ALS means.  Anyone can get it, it is evil and progressive, and there is no cure.

This brings me to my second reason for walking:  I walk to raise money.  I believe that science will find a cure or realistic treatment for ALS.  Not in my lifetime, but it will be found.  In the real-world research takes money.

At an individual level ALS Texas educates people about the disease, hosts support groups, and works year-round as an advocate for people with ALS. My hope is that every person diagnosed with ALS gets the love and support I have received.

My final hope (but not really an expectation) is that the next POWERBALL winner will donate millions to defeat ALS.

The rate of ALS in veterans is twice that of the public.  All military veterans with ALS will be classified as 100 percent disabled by the VA.

If you are diagnosed with ALS or possibly diagnosed, contact the VA center near you.   It doesn’t matter when you served, how long you were in, what you did, where you were stationed, or how long you have been out.

The ALS advocacy organization that works with the VA is Paralyzed Veterans of America (PVA).  When you contact PVA, they will walk you through the process and hand carry your paperwork up the line.

You will receive amazing benefits in addition to all medical care.  ALS is an obscenely costly disease, and the VA goes out of its way to eliminate that source of stress.

ALS is also hard because once someone sees me in a wheelchair and learns I cannot talk, they act like I am not there. They ignore me or talk to me in a childish voice. It drives me crazy that my mind is fully intact, but I cannot communicate the fact. That a fully functioning brain is in this damaged body, apparently never occurs to them.

So, with rapidly progressing ALS, it seems I am not as special as I thought, at least not in the way I thought.  I am special because I realize my life has been an amazing journey. I am grateful to have found ALS Texas and to have the opportunity to contribute to its mission.  This is just one of the special gifts I have received.   I realize that in these ways, I am special…

If ALS were more widely understood people might understand that it leaves the mind intact. That is the greatest things that ALS Texas does…educate the public.

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How the ALS Texas Community Impacts National Policy

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On May 18, 2022, several guests joined ALS Texas for a special virtual ALS advocacy event. During this insightful presentation, they discussed their experience as ALS advocates, what victories they’ve observed over the years, and how you can join the fight as an advocate. Keep reading for a recap of this exciting event!

Fighting Locally to Impact National Policy

When discussing ALS Advocacy, it’s easy to assume it starts at the White House, but that’s far from the case. In fact, the most important work you can do is with your locally elected officials. Director of Advocacy at the ALS Association, Ashley Smith, joined us to discuss this grass roots approach.

Ashley grew up in San Antonio and felt eager to connect with our ALS Texas community. “I’m always excited to talk to all of our Texas Advocates about how we empower people living with ALS, their loved ones, and the entire ALS community to advocate on behalf of themselves,” she shared.

Through her position, Ashley empowers people across the country to advocate on public policies that will impact people with ALS and their caregivers. Advocacy takes place at EVERY level of the government. From mayors to council members, all the way to the House, Senate, Congress, and President, but it all starts locally.

The ALS Association accomplishes this mission in several ways:

  • Sending action alerts to registered ALS advocates to equip them to speak up and advocate for key issues.
  • Engaging in in-person efforts, like district events, meetings, and conferences through the year.
  • Partnering with other advocacy organizations

“We will partner with anyone who wants to work with us and who has a voice in this space,” Ashley noted. There are many ALS organizations across the country that participate in ALS advocacy efforts, like I AM ALS and the Muscular Dystrophy Association. Additionally, other rare disease organizations partner with the ALS Association as those policies can impact multiple rare disease communities.

For example, the 2015 Steve Gleason Act, spearheaded by Team Gleason, ensures all those who medically need communication devices will have them covered by Medicare. This massive win not only impacted the ALS community but disease communities whose illness affects the voice.

As a collective, we have more power and can reach many more members of Congress than we can as a singular effort. – Ashley Smith

A Veterans Perspective on Advocacy: Juan Reyes

Juan Reyes, Air Force Veteran with ALS, joined the panel to share his experience. Since his diagnosis in 2015, Juan has become an incredible advocate for the ALS community, especially other veterans. Juan and his wife, Meg, felt inspired by the countless other people with ALS and their caregivers. They watched as those advocates used their voice to make things happen. “That’s what I caught the bug,” Juan shared, “It really infuses us with light, energy, love, and just the momentum to keep moving forward.

Juan recalled previous years when the Advocacy Day was held in-person in Washington D.C., his first experience being in 2016. Hundreds of ALS families came to the capitol, using their walkers, rollators, canes, and wheelchairs. “Making our presence known, it’s a time to bear hope,” Juan shared. There he had the opportunity to engage with elected officials and their staff to advocate for the community.

He shares with them his story, how he and Meg adopted three beautiful children and how this disease affects them all. How his military service made him twice as likely to be diagnosed with ALS than civilians. He also makes a point to share new studies that show there are certain career fields within the Armed Services are up to 10 times more likely to develop ALS.

He also shares the challenges that the general population experiences with this disease, especially given our nation’s healthcare system. He’s proud to have seen things big ticket items pass like the ALS Disability Insurance Access Act, which eliminated the waiting period for SSDI benefits for people with ALS, and ACT for ALS Act which creates better access to promising treatments for people with ALS.

Juan looks forward to what advocacy advancements are down the road and the moments he’ll have with his family along the way. “Although ALS makes every day challenging, I personally live by the rule, life is beautiful and amazing even with a terminal condition.”

Finding Power through Your Story: Sunny Brous

Sunny Brous was diagnosed with ALS in 2015 right before her 28th birthday. She’s been featured in many publications and partners with both local and national ALS organizations to advocate for change. Most importantly Sunny has found her voice and shares her experience on her blog SunnyStrong.com.

Since her diagnosis, Sunny has been to Capitol Hill three times, twice with the ALS Association and once with a rare disease legislation org. “Though those experiences were completely different, it’s still amazing to be able to be at the heart of where change happens and be able to own my voice through my story,” she shared.

Sunny encourages anyone that is even interested in advocacy to join the movement because of how simple it is. “They make it so easy. They send you the form letters, they tell you who you’re contacting, they draft the social media posts,” she shared. She noted they will even help you prepare points and your story if given a chance speak with an official.

Most recently, Sunny was thrilled to play a role in getting the ACT for ALS passed. “Getting to sit in my living room and watching President Biden come in and sign that into law just is amazing.” Sunny is testament to how people living with ALS benefit from these new laws. Through compassionate use, she receives a promising medication from the HEALEY ALS Platform Trial.

Being able now to participate in finding that next medication, finding that next therapy that makes this disease chronic and not terminal really rejuvenates my spirit and empowers me to keep going, Sunny Brous.

Sunny hopes that others will find the courage to join the fight against ALS as an advocate. Everyone has a story to share and deserves to have their voice heard. If you’re not ready to share your story, share Sunny’s story, share Juan’s story, share the stories from our community. “Anything you do is worthy of being shared and this community is better because of your voice,” Sunny shared.

How You Can Become an Advocate

From increasing funds for ALS research to the passing of the ACT for ALS Act, advocates across the country have helped make massive waves in public policy. But the fight isn’t over. We hope to make some significant advances in 2022, including:

  • Expand federal funding for ALS research
  • Ensure swift consideration and approval of new drugs at the FDA
  • Create more opportunities for people living with ALS to access new and emerging ALS treatments
  • Optimize Current Treatments and Care
  • Advocate for programs in Texas that improve the lives of people living with ALS and their loved ones

None of this is possible without you! Will you join the fight? Become an advocate in three easy steps below:

  1. Sign up to become an advocate by visiting alstexas.org/action.
  2. Keep an eye our for email notifications from our Advocacy team to take action! It’s as easy as clicking a button!
  3. Share stories from the ALS community to ANYONE who will listen! Storytelling is a powerful tool to raise awareness to this disease.

You can also join us for the 2022 National ALS Virtual Advocacy Conference from June 14  – 16. During the conference, attendees will learn the latest updates in ALS research, care services, and advocacy.

Become an ALS Advocate


Join the Virtual 2022 National ALS Advocacy Conference

Together, we can create a world without ALS!

To hear more from Ashley, Juan, and Sunny about their advocacy experience, watch the full event recording below!

A Note from Tonya: May, May Be the Answer

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May is National ALS Awareness Month, a month that is dedicated to education about the disease and the efforts happening around the world to find a cure, and to advocating for people with ALS and for their caregivers.

While designating one month as an “awareness” month is surely not an instantaneous fix, the increased visibility of the clinical statistics and shared personal stories just may be the missing pieces of the ALS puzzle.

Awareness can also be a tool for advocacy, an opportunity to connect with policy makers and share the urgency of action; backed up by our entire ALS Texas community! Every clinical trial, every milestone in advocacy leads us one step closer to creating a world without ALS.

Did you know that:

  • There are currently 58 active clinical research trials in Texas?
  • On December 23, 2021 we reached a groundbreaking milestone for the ALS community. President Joe Biden signed the Access to Critical Therapies (ACT) for ALS Act into law? ACT for ALS brings hope to the fight against ALS.
  • See more of our community’s impact in 2021:

There area number of ways to raise awareness, to help ensure that your voice is heard-and there is no age limit. Coming together as a community gives everyone an opportunity to become involved.

In Texas, we know that there are more than 3,000 young caregivers ages 5-30 years of age, and during the month of May, even youth and children can take action.  We’ll tell you exactly how to do this and more in this newsletter!

How can you continue to raise awareness in the fight against ALS this month?

  • Urge your representatives to support ALS research funding by signing the Dear Colleague letter.
  • Tell Insurers and Policy Makers to Ban Discrimination Against People Living With ALS
    The Institute for Clinical and Economic Review (ICER) is reviewing Amylyx Pharmaceutical’s AMX0035 and Mitsubishi Tanabe Pharma America’s (MTPA) oral edaravone. Their review will make a “value assessment” on these new therapies which will impact decisions on cost and access made by private and public insurance such as Medicaid at the state level and Veteran’s Affairs at the federal level. ICER’s value assessment uses methodology which has been called discriminatory by the National Council on Disability, a trusted advisor of the President and Congress. Sign the petition linked below to tell insurers and policy makers to ensure people living with ALS have immediate, full coverage and affordable access to new therapies. Sign our petition here.
  • Get an early start, and form your Walk to Defeat ALS team with family and friends.
    • Celebrate with us in October! We will be walking in-person in cities across Texas –
      Dallas, San Antonio, and The Woodlands on October 1.
      Austin, Fort Worth, and Houston on October 15.
      El Paso and Rio Grande Valley on October 29.

Awareness creates a foundation for change.

Together, as an ALS Texas community, in May and every month, let’s lock arms and be the catalyst for change!

-Tonya Hitschmann, Director of Community Programs

Read the May Newsletter

View Our Upcoming Virtual Events

 

ALS’s Youngest Caregivers: Caring with Love

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According to a 2005 report by the National Alliance for Caregiving, there are at least 1.3 million caregiving youth between the ages of 8 and 18 in the United States. Friends, this report was more than 15 years ago! Today, we know for certain that this statistic is very low; not only have the reported numbers increased, but many families are also reluctant to share their caregiving situation. Some families are embarrassed by their need for assistance and are hesitant to volunteer information on their household needs with school or social services officials. There are also many emotions and feelings involved, such as guilt, pride, denial, and fear. This means that young caregivers may be struggling in school or at home, and potential resources—like teachers or special support programs—are unable to offer assistance that may help relieve some of the stress.

In 2021, Forbes magazine shared information gathered by the new Global Carer Well-Being Index from Embracing Carers, highlighting that “25% of Gen Z and Millennial caregivers were in caregiving roles for the first time during the pandemic, compared with 15% of Gen X and Boomer caregivers. Overall, 20% of caregivers surveyed were new to caregiving and 60% of them were Gen Z or Millennials.”

In Texas, we know that there are close to 3,000 young adults under 30, youth, and children involved in the ALS experience.

Young caregivers are involved with both the activities of daily living (ADLs) and instrumental activities of daily living (IADLs), which include managing complex assistive devices, feeding, bathing and toileting.

This February, we are shining a loving spotlight on our ALS Texas young caregivers, and how they are rising to the challenge and supporting their families and loved ones living with ALS- with pride, advocacy, determination, empathy, and so much more! They are truly Caring With Love.

Before give you all of the information you need to save the dates of our calendar of events, we’d first like to share with you an incredible quote from Gabriel Poveda; insight that only someone who at a young age provided care for a parent or loved one is able to share with others. Gabriel’s father ended is battle with ALS in 2020, and Gabriel is now a senior at UT Austin, and in the Navy ROTC.

Words of empowerment and support for young caregivers:

 “You’re going to be a remarkably strong individual. For young caregivers, I really wish I could tell you that there’s some sort of personal…some sort of something that makes it a little bit worth it, but what that is, is very little.  The truth is-it’s going to be hard; very, very hard. The only personal solace I can genuinely give you is that you ARE going to be remarkably able to connect with other human beings.  You emerge with a sense of pain that makes us more empathetic and makes us feel closer to other people. Alongside your peers, you’re going to find that you enjoy more than them. It’s going to be bittersweet, but you’re going to enjoy walking, talking, and eating more than they ever are.  You’re going to enjoy having a family and having people you love more than they ever will…and when people are suffering, you’re going to be able to help them more than anyone else will.”- Gabriel Poveda

We invite you to join us for all our February Caring with Love events.  You will be inspired, empowered, hopeful, and connected to a community – a family that is here for you no matter what.

Tonya Hitschmann, Director of Community Programs

Caring with Love Virtual Events

We’re hosted several exciting events in February 2022 for Caring with Love month. Watch the recordings below!

Facebook Live Interview with Ronan Kotiya

Meet Ronan Kotiya, a young caregiver to his father, Rupesh, who was diagnosed with ALS in 2014. Ronan is passionate about raising awareness for ALS. He even published a book Rupesh J. Kotiya vs. ALS : My Dad’s Fight For Survival to provide an insight into what it’s like to have someone with ALS in your life. Way to go Ronan for being a young leader in the fight against ALS!

Trauma-Informed Yoga for Kids with Yoga N Da Hood

Youth today face so much trauma, including trauma connected with the ALS experience. YOGA N DA HOOD WELLNESS is dedicated to providing social and emotional learning through YOGA and MINDFULNESS for children of all ages. Through the practice of Trauma-Informed Yoga and Mindfulness, youth can develop stress and trauma management, self-esteem, enhanced strength and flexibility, and enhanced concentration and memory. Thank you to Mitsubishi Tanabe Pharma America for sponsoring this event!

Young Caregiver Panel Discussion

Join ALS Texas as we visit with some of our young caregivers throughout the state, in an open and honest discussion that all families will want to hear. We also encourage you to bring your family’s questions for the panel. We are all better and stronger together!