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        • Clinics and Centers
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ALS Association Continues to Put Pressure on the FDA Following the We Can’t Wait Action Meeting

June 24, 2021 by Rhema Jones Leave a Comment

One month ago on May 25, 2021, representatives from the FDA joined a We Can’t Wait Action Meeting. During this meeting, eight ALS advocates from across the US shared their personal experience with the disease to highlight why those with ALS need expedited access to experimental therapies.

Following the We Can’t Wait Action Meeting, the ALS Association sent a letter to the FDA that requests the agency to reaffirm their commitment to the 2019 ALS Guidance and provide details regarding how they have implemented the guidance.

The FDA’s Response to the Letter

Dr. Patrizia Cavazzoni, Director of the Center for Drug Evaluation and Research sent a response letter to the ALS Association on June 15, 2021. The letter acknowledges the “burden of ALS for patients, their families and caregivers,” noting there is an “unmet need for treatments” for the disease.

We can also assure you that we are exercising the regulatory flexibility described in FDA’s 2019 guidance for industry titled Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment (ALS Guidance) and we continue to commit to doing so,” Dr. Cavazzoni shared in the letter.

The FDA responded positively to the We Can’t Wait Action Meeting, but the ALS community still has grave concerns. The FDA has not clearly communicated what they are doing to expedite the approval of promising treatments for ALS patients. Yet they allow regulatory flexibility for other disease treatments.

The FDA recently used its regulatory flexibility to approve Aduhelm to treat Alzheimer’s. While this is great news for those living with Alzheimer’s and their loved ones, those living with ALS are left to wonder why the same urgency is not granted to them.

In the letter from the FDA, Dr. Cavazzoni shared that they are “committed to exercising [the guidance] when appropriate.” However, the agency does not appear to make any of those considerations for AMX0035. The drug met its primary and secondary endpoints in The Phase 2 Trial and is generally safe. Yet the FDA requires another clinical trial.

Health Canada is already working with Amylyx to bring the drug to market for Canadians with ALS in 2021. Yet Americans with ALS will have to wait years to access the drug. That is if the FDA even allows it to hit the market.

How We’re Moving Forward

The ALS Association is deeply committed to expediting the access to promising drug treatments to those living with ALS. We hope to achieve this by:

  1. Continuing to put public pressure on the FDA
  2. Work behind the scenes to expedite change
  3. Seek greater public accountability for the FDA

Read more about this response and how the ALS Association is implementing the above action items here. Our organization will continue to share important updates as they arise as we continue the fight to end ALS. We will not rest until we find a cure!

Read the Full Letter from the FDA

Read the We Cant Wait Action Meeting Summary

Become an ALS Advocate

Filed Under: Advocacy, News, Research Tagged With: advocacy, ALS drug, ALS Research, FDA

Staying Connected on the ALS Journey: Norman and Dee Jones’ Story

June 14, 2021 by Rhema Jones Leave a Comment

Faith has guided Norman Jones his whole life. Even in the face of an uncertain ALS journey, it hasn’t wavered. 

Norman Jones described the beginning of his ALS journey as an emotional rollercoaster. He had gone from the highs of retirement and having more time to spend with his family, to the lows of a devastating ALS diagnosis. “But my faith has kept me strong,” Norman shared. “My wife, my kids, my friends, family, and church…they kept me strong.”

Even from a young age, Norman’s grandmother instilled in him the importance of faith. It kept him strong when he moved to the U.S. from Jamaica as a child, and it led him to become a Chaplain in the Army. Norman served in the army for 32 years, 24 of those being as Chaplain, before retiring in 2016.

Two years later, he noticed symptoms such as his left foot dragging while he walked and slurred speech. Through a series of tests and doctor’s appointments, Norman was formally diagnosed with ALS in May 2018.

Today, Norman and Dee, his wife of 41 years, live in San Antonio. They have two daughters—one who lives with them at home and the second who recently got married and is teaching in Korea.

Norman is still involved with his church, teaching a Wednesday Bible study, preaching occasionally, and even sharing weekly email devotions with his congregation. “Even though I have my limitations, I don’t let that stop me from getting involved.”

Dee and Norman connected with the ALS Association after visiting with Dr. Jackson at UT Health in San Antonio. Just two years into their ALS journey, Norman and Dee had to also adjust to the challenges of the COVID-19 pandemic, as In-person clinics and support groups came to a halt for the safety of Texans with ALS and their families.

During this time, virtual support groups kept the Jones family connected with the ALS community. “You’re able to express your emotion and your struggle. And then you get advice from others how they handle their struggles,” Norman shared.

Hearing the stories of other ALS families and swapping notes has been incredibly helpful to Dee as a caregiver. “For me, it’s a lifeline,” Dee shared. She recalled that many times, she has heard experiences from other wives and caregivers that are like her own. “Some of us are going through the same issues and same journey. I try to embrace it.”

Besides the hope of finding a cure, Norman, and Dee hope that researchers will discover ways to detect ALS early and provide treatments to improve quality and length of life with the disease. “I have a lot of hope,” Norman shared.

In the meantime, Norman encourages others on the ALS journey to stay connected to the community around them. “Reach out and connect with family, friends, and organizations, because you get your strength and support from others.”

Filed Under: ALS Hero, Inspiring PALS, Stories Tagged With: als stories, support groups, veterans with ALS

A Note from Tonya: If You’re Happy and You Know It

June 5, 2021 by Tonya Hitschmann 2 Comments

“That makes me happy!”

“Is anyone really truly happy?”

“I’ll be happy when…”

We have all heard someone say these phrases, and if we are being honest, have thought and said them ourselves. HAPPY. You know how when you stare at a word for too long, it can start to look weird; like it is spelled wrong, or it doesn’t make sense?  Happy, is to me, one of those words.  Then, when I think about it even more, not only does it look weird, but I am amazed that such a small word can have such a BIG impact on our lives, and the lives of everyone around us.

Martha Washington said, “The greatest part of our happiness depends on our dispositions, not our circumstances.” Is it possible to experience happiness regardless of your situation; experience contentment whatever your circumstances? Yes, it is. And it all starts with awareness.

We are happy now, and sometimes we don’t even notice it. You see, happiness is very fragile, and we often make it conditional.  We struggle to balance what we currently have and what we want. The problem with conditional happiness is that it keeps us on hold while we wait for a perfect life- a life that does not exist. The solution is to stay present in the here and now. The problem isn’t life, but your expectations of it.

Have you ever felt like you’re just waiting for something really good, life changing, THE fix to everything that is broken, to arrive? You say to yourself, “C’mon future-I’m ready, because I know it will surely be better!”

The future is an illusion and only a concept in your head. That is how our minds trick us; we are promised that we’ll get something that we already have. The future begins today, right now-but how do we stay present in the here and now, and invite happiness into our lives?  Try these tips as a start!

Protect your mental health no matter what – Set your boundaries for self-care, and filter what you let your eyes read, and your ears hear.

That’s my jam. I dare you to NOT smile while blasting your favorite feel-good song!  And I double dog dare you to choose your ALS theme song. (bonus points if you email me and share your jam)

Write it down. Did you know that taking the time to write down just three positive things each day will make you more optimistic and less stressed?

Hello, Sunshine. Just a few minutes of fresh air and sunshine can give you a fresh new perspective.

Think positive. No matter how bad things may seem, be grateful. Warm water on a cold day? Amazing! Cold water on a warm day? Delicious!

Do not neglect the present by keeping your focus on the past, bring yourself to the moment and enjoy your journey as it truly is, not the one that you have imagined and planned in your head.  You are happy now, but you must be the first one to notice it.

Tonya Hitschmann, Director of Community Programs

Read the June Newsletter

View Our Upcoming Virtual Events

Filed Under: Caregivers and Family Tagged With: als community, ALS Family, caregivers, young caregivers

We Can’t Wait: ALS Advocates Urge the FDA to Expedite Access to Experimental Therapies

June 3, 2021 by Rhema Jones 1 Comment

The average life expectancy for someone after an ALS diagnosis is only 2 – 5 years. However, the process of developing, testing, and approving new treatments takes far longer. For those living with ALS, time is limited—We Can’t Wait.

On May 25, 2021, representatives from the FDA joined a We Can’t Wait Action Meeting. During this meeting, eight ALS advocates from across the US shared their personal experience with the disease to highlight why those with ALS need expedited access to experimental therapies.

Compelling Testimonials from the ALS Community

John Robinson from Parish, FL, a member of the board of trustees of the ALS Association and retired military veteran of nearly 32 years, was diagnosed with ALS in 2019. ALS not only affects the person with the disease but also their family caregivers. Both he and his wife can no longer serve their communities in the same way because of ALS. “The loss to society of their skills and humanity leaves holes never filled the same way again.”

Sunny Brous, a Texan with ALS, joined the call to share her perspective. Sunny was diagnosed with ALS in 2015 at the young age of 27. For Sunny, access to experimental treatments go beyond extending her own life. “Expanded access is how I can contribute to finding a cure for ALS. It takes my love for others and makes it a quantifiable action combining research and science and my dedication to the greatest good of people living with ALS.”

Sandy Morris, from Truckee, CA played a recorded message. She tearfully shared how many of her friends with ALS died waiting for access to life saving drug treatments. “Think about how much better it would be if we were able to die trying rather than die waiting,” she shared, urging the FDA to consider how their delays harm those living with ALS. “It’s not within my power to save my life—it’s within yours.”

Troy Fields from Champa Bay, FL was diagnosed with ALS in 2018. He noted how the considerations of benefits versus risk should be put in the hands of those living with ALS. “Because unless it is your own life on the line, you simply do not get it.”

Cari Meystrik from Nashville Tennessee was diagnosed with ALS in 1998 when she was only 28 years old. She has watched hundreds of friends die from this awful disease. “Would I jump to try a drug that might help me live longer of a disease that I am dying from if it has already proven to be sage and well tolerated but isn’t approved yet? Absolutely. Give me that chance.”

Jay Quinlan from New Orleans joined with his wife and caregiver Stephanie. “You have shown through your recent handling approvals for COVID vaccines that flexibility and expediting processes are possible.” He asked the FDA to use the same urgency when it comes to approving drug treatments for those living with ALS.

Tommy May from Pine Bluff, AR was diagnosed with ALS in 2005. Due to slow progressions, he was both unable to participate in clinical tries and frustrated with the lack of access to treatments. He discussed how those living with ALS are desperate for HOPE on their path. “We are not interested in the long-term. We are desperate for the here now.”

Larry Falivena of Apex, NC, has ALS caused by a mutation of the SOD1 gene. The fight for treatment access is not just for himself—it is also for his children. “I’m asking the FDA to help make sure my boys don’t have to worry about ALS.” He shares that even if the opportunity exists for just a small number of patients to have extended time on this earth that they need that chance.

Where Do We Go from Here?

In 2021, the ALS Association is committed to accelerating the development, approval, and access to affective new treatments. We will do this by re-introducing and passing the Accelerating Access to Critical Therapies (ACT) for ALS Act and the Promising Pathway Act, so the FDA is fully equipped to speed ALS trials and drug approvals. We will discuss these matters further during the annual ALS Advocacy Conference in June.

It is our sincere hope that the testimonials of these individuals and those who sent written stories will compel the FDA to make actionable changes for the ALS community. Time is off the essence—We Can’t Wait.

Submit your testimony to the FDA

Register for the Virtual ALS Advocacy Conference

Read Our 2021 Advocacy Priorities

Filed Under: Advocacy, News, Research Tagged With: advocacy, ALS Advocacy, ALS Research, ALS treatment, FDA

Messy Motherhood: Jennifer Mercz’s Story

May 7, 2021 by Tonya Hitschmann 1 Comment

I felt I was falling short in a lot of places. You can’t have it all together.

In January 2019, after a year of doctor’s appointments, increased symptoms, referrals and second opinions, Jack Mercz was diagnosed with ALS at the age of 53.  In a recent ALS Texas interview with his widow Jennifer Mercz, Jennifer shared “our whole relationship pretty much changed in a day.”  Jennifer and Jack had a then two-year old son, and Jennifer added, “I had been with my husband for 10 years and suddenly found myself not only caring for my husband but also my young child.” She recalled moments that included putting her son in the bath and helping her husband in the shower at the same time, and at the end of the day being too tired to even take a shower herself.

Jack and his family battled ALS for more than a year- and amid the COVID pandemic as well, until Jack passed away in September 2020. “Walking on this journey was one of the most challenging things my family has ever endured,” shared Jennifer. Yet, she is ready to share her experience with others. “This community and support are lifechanging; to have support and know that you are not completely alone.  Me sharing…if this helps one person that’s good enough for me.”

Jennifer shared that Jack was not very accepting of any kind of help; he wanted to be stronger in every way and help Jennifer at home when he was not traveling for work. Frustration over his declining physical abilities and strength led to anger and depression and Jennifer shared that she “became very standoffish emotionally-clinical with him.” While Jennifer did reach out to ALS Texas and the community as much as she could, she added that “things were moving so quickly that I didn’t seem to have time” to do more-such as accessing our ALS Texas equipment loan program sooner. “The ALS Association delivered a Hoyer lift to our home-it was great, and we needed it.  Jack was able to get up (after weeks of being in bed) and sit on the couch with our son.”  He told me that he wished we would have had that [Hoyer lift} earlier.  In retrospect, she added that she would do things differently in making some “executive decisions” about Jack’s needs; equipment and care that would have also benefitted her.  She urges all family caregivers to seek help with caregiving if at all possible-from anyone who is able to help, including friends and family members, and when someone says, “Hey, do you need help?” the answer is “YES! Here’s how you can help me.”

You put yourself on the back burner. Get help, even if just for an hour, so you can eat, shower, and take a deep breath. Support, from my husband’s perspective, was not a priority, but I needed it… 20-30 minutes for yourself is the most important.

ALS Texas offers programming and support for caregivers of all ages. You know when you receive safety instructions before traveling by air, and the flight attendant tells you that in the event of an emergency, you should put the oxygen mask on yourself before helping those around you? They say this because you will not be any good to those who depend on you if you cannot breathe yourself. This applies in caregiving too, and it is very important to remember.

Not only do we have Brewed Awakenings, our caregiver group just for women, or one of our many Connection (Support) Groups throughout the state for both those living with ALS and their caregivers, but we also host workshops such as Running on Empty: Burnout and Compassion Fatigue, The Cost of Caregiving.  Often, caregivers like Jennifer share that they just do not have time to attend any of these. In reality, you cannot afford NOT to.

Jennifer was dealing with so many different emotions, and candidly shares that she was “in such a dark place.  Added to all of this was an unneeded dose of Mom Guilt. Mom guilt is the feeling of guilt, doubt, anxiety, or uncertainty experienced by mothers when they worry that they are failing or falling short of expectations in some way.  Being a parent is one of the most difficult jobs in the world and does not come with a handbook, and surely not a handbook for when ALS enters your life. No book, pamphlet, workshop, or conversation can truly prepare you for what you are about to experience.  Jennifer recalled once giving her son a bag of chips and then going to care for Jack.  “When I returned the bag was laying there empty, and I thought to myself, I hope my son ate those and not the dog. At times that was all that I had time for.”

Pay more attention to what is real and less attention to what you feel. Feelings can trick you in to thinking you are the worst mom out there.  Being level- headed and rational with your thinking will help you to see what is really going on.

When asked how she and their now almost four-year old son are doing today, Jennifer replied, “Grief is a tricky thing. Overall, he is good, and I’m touch and go.  Today, I’m good.”  ALS Texas walks alongside our families throughout every phase of the disease and we also have many bereavement resources for adults, youth, and children, and hosts a quarterly Bereavement Group.

Learn More about our Caregiver Programs

View Upcoming Support Groups

Filed Under: Caregivers and Family, Stories Tagged With: als caregiver, support groups

Embrace the Equipment: Mike & Mary Busch’s Story

May 6, 2021 by Rhema Jones Leave a Comment

As ALS progresses, it robs you of the ability to eat, speak, move, and breathe on your own. One of the most important resources provided by the ALS Association of Texas is our Equipment Loan Program. Access to no-cost equipment loans, give Texans with ALS their much-needed freedom and mobility back. For ALS families like Mike and Mary Busch, this program is life changing.

“We’ve been great beneficiaries of the loan closet, and unfortunately though they had challenges during COVID in terms of delivery they made arrangements to have things direct shipped.” Mike shared. His family has utilized equipment like ramps for the house, a special shower chair, and Hoyer lifts. “They’ve come incredibly handy.”

For Texans with ALS, durable medical equipment not only allows them to maintain their independence but also allows their caregivers to better care for them. “I couldn’t do it alone if I didn’t have that Hoyer,” Mary shared, noting how they use the lift at least four times a day. “It’s a shame when you see people never getting out of bed because they don’t have the equipment. It lets you get up and feel like a normal human.”

Mike’s core strength has diminished as his ASL progresses, making it difficult to sit in a traditional chair. “One of the biggest lifesavers in addition to the Hoyer was a special chair that makes showering easier.” Equipment like Hoyer lifts, ramps, and shower chairs, bring Mike a sense of normalcy during an otherwise difficult ALS journey.

“Anticipating things coming down the line and getting the equipment before you need it is important,” Mike shared. Through ALS Texas and our community partners, we help Texans with ALS stay one step ahead of the disease.

One of Mike and Mary’s other big pieces of advice for ALS families: “Embrace the equipment,” even when it is overwhelming. “I can’t say enough good things about ALS Texas and how they’ve supported us. Just in bringing the community together and the equipment closet…I hope everyone would grab every opportunity they have to grab all the resources available,” Mary shared.

Learn More about the Equipment Loan Program

 

Filed Under: Inspiring PALS Tagged With: als community, als stories

A Note from Tonya: Our Hope Is Our Belief, and Belief Is Our Hope

May 1, 2021 by Tonya Hitschmann Leave a Comment


May is ALS Awareness Month.  While every month of the year brings a long list of very worthy causes to our attention-well, July’s National Ice Cream Month might be a questionable “worthy cause”, but stay with me here.   The focus is awareness.  We see the name of the causes, hear them discussed in circles, read statistical information regarding their origin and current status- and all with the goal of becoming more aware of what is happening all around us.

We’re aware, then what?  May is ALS Awareness Month- what exactly are we aware of?  We are aware of the statistics-here are a few ALS Texas facts:

There are almost 3,000 young adults, youth, and children who are ALS family caregivers in our state alone.

These aren’t all of the statistics-and yet this information sure makes us aware that in 2020, ALS didn’t stop.  And neither did we.

Once we are aware, we must then BELIEVE that our awareness will bring about change, and believe in hope.  My favorite comedy series that is streaming right now(and favorite by a long shot) is Ted Lasso.  It is hilarious, and even more than that, it makes me feel good. I find myself immediately re-watching the second I finish an episode.  I have also discovered that I’m collecting Ted’s wittiest sayings to use when I most need them:

I believe in hope. I believe in BELIEVE. – Ted Lasso

As we help bring awareness to ALS not just in May, but every month, we are helping to create hope-hope of a world without ALS.  We bring awareness to the need for funding to help loan more than a million dollars in medical equipment to our families;  awareness to the need for more research in understanding the cause of, and treatment for this disease; awareness to that fact that thousands of young people are helping provide care to a loved one living with ALS-and maybe delaying college, sacrificing social relationships, and feeling isolated in their situation; and awareness that we have a “Texas-strong” community of clinicians, professionals and therapists, passionate ALS Texas team members, committed family caregivers, and those living with ALS, who are all locking arms in the fight and walking alongside each other every step of the way.

In a recent April 2021, Mass General Department of Neurology webinar and audience Q&A about the HEALEY ALS Platform Trial, Dr. Daragh Heitzman of Texas Neurology in Dallas shared “I am excited about the future”- regarding ALS research and clinical trials.

Awareness leads to belief.  We believe in persistence, in progress, and a world where ALS does not exist. Our hope is our belief, and belief is our hope.

Tonya Hitschmann, Director of Community Programs

Read the May Newsletter

View Our Upcoming Virtual Events

Filed Under: Caregivers and Family Tagged With: als community, ALS Family, caregivers

2021 Under Ballou Skies Hero: Sarah Durand

April 12, 2021 by Rhema Jones 1 Comment

This year, we are honoring Sarah Durand as our ALS hero during the Under Ballou Skies Golf Classic & Party. In the last year, Sarah has not only had to navigate life during a pandemic, but also an ALS diagnosis.

Sarah currently resides in Austin, where she has lived for the last 18 years. She built a career in massage therapy, working for two different resorts. In September of 2019, Sarah started to notice that one of her fingers would not fully extend. She thought it might be the onset of arthritis, a common experience among massage therapists.

Once the COVID-19 pandemic began, resorts closed, giving Sarah several months off, yet she saw no improvement with her finger. She went to a Rheumatologist and was diagnosed with rheumatoid arthritis in early 2020 and started doing injection treatments. However, after three months of injections, her condition continued to worsen.

“I noticed in my yoga class that I couldn’t balance on my right leg anymore,” Sarah shared. After visiting with a neurologist, Sarah was diagnosed with ALS in September 2020. She even went to two other doctors for a second opinion—both coming to the same conclusion: ALS.

Getting Connected with the ALS Community

Sarah connected with the ALS Association of Texas shortly after her diagnosis. She already visited a multidisciplinary ALS clinic once and plans to go twice a year for routine care. And while she may still be in the early stages of the disease, Sarah knows that ALS Texas is just a phone call away for everything from no-cost equipment loans to support groups!

ALS can affect people of any age and gender, and the average age of diagnosis is 55, but at only 39 years old, Sarah hopes to connect with younger people with ALS, especially other women. “I recently have found a couple of girls that I’ve started talking with and that’s been a true blessing, having somebody that understands what I’m going through.”

A New Normal

In the meantime, Sarah is finding a new normal, from adjusting her home to make it accessible to applying for disability. “Once I get adjusted to one thing, I lose control of something else.”

Sarah has even had to changed how she spends her free time. “A lot of my hobbies, I can’t do them anymore,” she shared. “I loved to go hiking and loved to go running. I have two paddle boards in my backyard that I stare at all the time and can’t use them, you know?”

Sarah finds joy in time spent with her boyfriend, Danny, her friends, or her two dogs and cat. She cheerfully shared how Danny is incredibly supportive of her ALS journey, “He’s really been with me day in and day out.” From cooking together, to enjoying a relaxing day at the pool, Sarah and Danny are making the most of every moment they have together.

Fighting to Raise Awareness

Sarah is passionate about raising awareness for ALS. “I had never even heard of ALS before I got diagnosed,” she shared. And finding a cure for ALS starts with people seeing the need for a cure for ALS.

Before being diagnosed with ALS, Sarah ran races and supported fundraising events for breast cancer research. Her mom had fought the disease, which made it a cause dear to her heart. However, she noted that there is not the same kind of widespread awareness surrounding ALS. “I never see anything for ALS like pins, hats, clothing”.

Sarah hopes soon that more doors will open to host fundraising events to awareness efforts and critical research for a cure and reliable treatments. However, there is an exciting way that you can support Texans with ALS like Sarah from the comfort of your own home!

Supporting Texans with ALS at Home

This year for Under Ballou Skies, you can support Texans with ALS from the comfort of your own home with our Party with a Purpose basket. Join us on May 13 for a virtual party, where we’ll honor Sarah and support Texans with ALS with an auction. Each basket includes boutique picnic provisions and items to make a Tito’s signature cocktail for you and your guests!

Secure Your Party with a Purpose Basket Today

Support Texans with ALS

 

Filed Under: ALS Hero, Ballou Golf, Stories Tagged With: ALS Hero, als stories

Telehealth Coverage for Speech Therapy Services Extended through the Duration of the COVID-19 Pandemic

April 9, 2021 by Rhema Jones Leave a Comment

In a huge win for the ALS community, the Centers for Medicare & Medicaid Services (CMS) expanded telehealth coverage for speech therapist services for the duration of the COVID-19 pandemic. This victory was made possible through the collaboration of the ALS Association and the American-Speech-Language-Hearing Association (ASHA).

Kathleen Sheehan, Vice President of Public Policy at the ALS Association shared, “These changes will allow speech therapists at ALS clinics and throughout the country to continue treating patients in the safety of their homes and cover services that can be done effectively using telehealth.”

Now there are FIVE critical services available via telehealth for people with ALS including clinical care for swallowing function and evaluations for speech-generating devices. These services are critical to people living with ALS and the day-to-day challenges they face.­

Prior to the COVID-19 pandemic, telemedicine was not widely available because of virtual platform restrictions and insurance barriers. Widespread access to telehealth became an urgent need for those with ALS and other vulnerable groups as the pandemic progressed and clinics closed.

The ALS community, ALS Association and other disease organizations advocated for new guidelines to remove the barriers to telemedicine. Because of this, Texans with ALS were able to access care across the state that was not possible before COVID.  But the fight is not over yet.

These guidelines will expire at the end of the current public health emergency, estimated to last through the end of 2021. However, the ALS Association is dedicated to continuing the fight for permanent expansion of these guidelines to provide access to telehealth services post-COVID-19. This is just one of several public policy priorities for 2021.

We have recently seen promising development on Capitol Hill in the progression of this fight. The ALS Association endorsed the Telehealth Modernization Act through written testimony in March. This act would make telehealth access permanent for Medicare beneficiaries. This would not only impact access to remote care, but also access to remote clinical trials in the search for a cure for ALS. Read the full announcement here.

View our 2021 Public Policy Priorities

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Filed Under: Advocacy Tagged With: advocacy, ALS News, COVID-19

A Note from Tonya: Bird’s Nest on the Ground

April 1, 2021 by Tonya Hitschmann 1 Comment

With each of our monthly newsletters, our goal is to truly engage with each of our families- to share the latest ALS news, ways to connect with each other and our team, and opportunities to learn more about living with ALS. Along the way, I’ll be sharing encouraging words for our ALS Texas community. Starting in April, we’ve decided to share these notes with everyone on our blog, because let’s be real. We all could use a little extra encouragement and perspective on the journey and in a life lived PurposeFULLy! 

I have shared before that Spring is my absolute favorite time of the year. It’s a beautiful season of new beginnings, growth and change. I love hearing the birds sing in the morning and watching them build and prepare their nests. I even hang flowering baskets on the patio and bird houses in the trees to make things easier- and to entice them in to making our backyard home.

This made me think of the phrase “bird’s nest on the ground”.  It refers to something being very easy and not at all a challenge-offering at least some advantage with little effort or risk.  Do you ever seek the bird’s nest on the ground-especially when it comes to FEAR and uncertainty? While the temporary fix may seem easier in the moment, it often creeps back up again until we put on our shield and truly face FEAR, rise above it and through it, and begin the much brighter journey of courage and peace. We can’t do that alone, and our monthly newsletter shares just some of the ways that you connect with others and face your fears within our ALS Texas community, and with a whole lot of encouragement and support along the way.

Tonya Hitschmann, Director of Community Programs

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Filed Under: Caregivers and Family, News Tagged With: Community

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