ALS Texas

Preparing for an Emergency During Hurricane Season

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Emergencies and disasters can strike quickly and without warning. For the thousands of Americans living with ALS, emergencies such as fires, floods, and acts of nature present a real challenge. June marks the official start of hurricane season and with the coronavirus pandemic, it’s more important than ever to make sure you are prepared.

It is critical that people with ALS and their family members be proactive and make plans to protect themselves in the event of a disaster. Making the conscious decision to be prepared takes work, but it is worth it. The more you do, the more confident you will be that you can protect yourself when the time comes.

Some ideas and things to think about to help keep you and your family safe:

  • People living with ALS using special equipment in the home should contact their local electric service operator to register the household as having an occupant requiring electricity for medical devices. This may include providing documentation of disability. This helps power companies prioritize outage restoration in times of crisis.
  • Contact your local or county emergency preparedness office. Ideally, families with significant mobility or respiratory challenges have already registered with their local or county emergency preparedness office, indicating their specific unique needs in the event of an evacuation or the need to proactively move to adequate shelter. Regular shelters may not have the electrical service or additional staff required for people using power wheelchairs or any medical equipment requiring electricity, and coronavirus may have altered your community’s plans. The Red Cross is a great resource for finding local shelters in your area.
  • Know what kinds of disasters (especially weather/natural disasters) could happen in your area and consider what your environment might look like after one occurs. Sign up for alerts from FEMA or local weather sources. These alerts can be directly texted to a cell phone, a Facebook or Twitter account, or your home phone number.
  • List of Your Network – Complete a personal assessment and personal support network of family, friends, relatives, neighbors, roommates, and co-workers who could assist you at a moment’s notice. Keep this list handy at all times, including a printed version in case of power loss.
  • Emergency Information List – Make an emergency information list so others will know who to call if they find you unconscious, unable to speak, or if they need to help you evacuate quickly.
  • Medical Information Packet – This packet allows a person to provide medical information regarding specific issues related to ALS care, and how your issues can most appropriately be addressed. Compile a list that contains the names and numbers of your doctors, your medications, dosage instructions, and any existing conditions. Make note of your adaptive equipment, allergies, and any communication difficulties you may have. It is recommended this be on paper instead of a computer data stick because there may not be electricity to run a computer to retrieve this information.
  • Key Medical Information Mobile App – The Key Medical Information app provides medical personnel with critical information to care for a person with ALS during an emergency. In addition to medical do’s and don’ts, the app provides a communication board and emergency contact fields for users to reference. The app is available in Google Play and the Apple Store and is searchable by “Key Medical Information” or “The ALS Association”.
  • Medication Supply – Keep at least a seven-day supply of medications on hand. Ask your doctor or pharmacist what you should do if you cannot immediately get more.
  • Identify Evacuation Routes from Your Location– Identify evacuation routes and safe places to go during a disaster. Remember that in the event of a natural disaster you may be under mandatory evacuation. Should this occur and you don’t have accessible transportation, call your local police department and inform them of your situation.
  • Disaster Supply Kit – Keep a disaster supply kit, also known as a “go bag,” in your home, car, workplace or anywhere you may spend your time. Include such items as food, water, a first aid kit, letter or picture board, adaptive equipment, and batteries. If you cannot speak, attach a small recorder (like those found on key chains) on the outside of the bag. The recording should say something like “My name is ______. I cannot speak. I communicate by ______. In case of an emergency, please call ______.”
  • Show others how to operate your wheelchair or other assistive devices.
  • Keep in mind that during an emergency, you may need to explain to first responders and emergency officials that you need to evacuate and shelter with your family, service animal, caregiver, or personal assistance provider so they can provide the support you need to maintain your health, safety, and independence.
  • If you cannot verbally communicate, make sure you always have a Rapid Access Communication System in place. This could include a letter board, laser pointer, or other communication systems that do not rely on electricity. You can find more information at www.patientprovidercommunication.org.

Finally, be informed. There are various web sites and telephone numbers to help with emergency preparedness and keeping you and your family safe during difficult times. Here are a few to consider:

www.ready.gov
www.redcross.org
Prepare for Emergencies Now: Information for People with Disabilities

Original blog post was posted here.

Save Lives Through the ALS Texas Equipment Loan Program

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ALS is an expensive disease, and one of the biggest expenses people face is the cost of medical equipment. The ALS Association’s Equipment Loan Program alleviates this financial burden by providing equipment to people with ALS for free.

COVID-19 has prevented ALS Texas from accessing equipment in our loan closet, meaning we are purchasing brand new equipment for Texans fighting ALS. Donations will keep the Equipment Loan Program operating, providing life-saving equipment to people with ALS.

Collin Hadley, person with ALS, speaks about how the Equipment Loan Program has helped his life.

“My fight against ALS has been no different. As a family, we have been determined to maintain positive attitudes and make as many memories as possible while we can. Our motto of, “Don’t Count the Days, Make the Days Count” sounds like an aspirational goal, but is only as good as the execution upon it. I’m here to tell you that the ALS Association has made it possible for me and my family to make the days count over the last four years.  

They have anticipated my needs and stepped up over and over with their ALS loaner closet.  

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.  

My family and I took a trip to Colorado this past summer. The ALS Association delivered a power wheelchair to the hotel for me. On the first day, it was determined that the battery was dead and wouldn’t charge, risking me having to stay in the hotel room for the week…a representative from The ALS Association in Denver left at 6 am to make the 4.5-hour drive to get me a new loaner the next day.  These are a few of the many examples that have allowed me and my family to witness the dedication of the ALS Association.to get me a new loaner the next day.  These are a few of the many examples that have allowed me and my family to witness the dedication of the ALS Association.”

When you’re dealing with a disease that robs you of everything, this program can be life-changing. Support people with ALS today by donating to the Equipment Loan Program and our generous partner, The Barbara Ildebrando Fund, will be matching all donations up to $5,000.

Donate Today

The ALS Association, I AM ALS Award BrainStorm Cell Therapeutics $500,000 for ALS Biomarker Study

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The ALS Association and I AM ALS announced today that the organizations have awarded a combined grant of $500,000 to BrainStorm Cell Therapeutics (NASDAQ: BCLI), a biotechnology company, to support this amyotrophic lateral sclerosis (ALS) biomarker research study. The grant will be used to draw insights from data and samples collected from patients enrolled in BrainStorm’s ongoing phase 3 clinical trial of its NurOwn® treatment, to further understanding of critical biomarkers associated with treatment response for people with ALS.

The study is designed to evaluate how NurOwn interacts with its targets in the brain and spinal cord and to explore the changes in the biomarkers that may correlate with response to the drug treatment. Biomarkers are any measurable substance in the body that change over time (such as cholesterol or blood pressure) and that correlate with disease processes or treatment response. If successful, this study will help confirm that the ALS treatment NurOwn works in the way it is intended and will help inform our larger understanding of ALS biomarkers.

“This grant to BrainStorm marks an important step forward in establishing how exactly NurOwn works in the body,” said Calaneet Balas, President and CEO of The ALS Association. “This research is also important to our overall pursuit of identification and validation of ALS biomarkers. We hope NurOwn is ultimately proven effective in treating ALS and we stand ready to support BrainStorm in its plan to apply for a biologics license for NurOwn.”

Danielle Carnival, CEO of I AM ALS commented, “We need to move with urgency in all of our efforts to deliver treatments and cures for ALS. This biomarker research will help us more expeditiously understand the effectiveness of NurOwn, while possibly unlocking discoveries that provide clues for other promising treatments. We are at a pivotal time for ALS research in pursuit of treatment solutions and will do whatever we can, together, to drive new answers and new hope for patients.”

The joint award to BrainStorm consists of a $400,000 grant from The ALS Association and a $100,000 grant from I AM ALS. As part of this agreement, BrainStorm has agreed to share data and samples with the ALS community so that the results can be independently validated and to advance other ALS research.

Chaim Lebovits, CEO of BrainStorm stated, “We sincerely appreciate the scientific recognition and generous support from The ALS Association and I AM ALS and we are excited through this study to further an already strong partnership between The ALS Association, I AM ALS and Brainstorm. This critical research study involves one of the largest and most robust clinical trial collections of CSF biomarkers. Data generated from this study will increase our understanding of how NurOwn® therapy impacts ALS disease progression and may identify patients who benefit the most from this form of therapy. We also hope that this research study will benefit the broader ALS scientific community as we collectively advance towards our shared goal of delivering much needed treatments.”

About NurOwn®
NurOwn® (autologous MSC-NTF) cells represent a promising investigational therapeutic approach to targeting disease pathways important in neurodegenerative disorders. MSC-NTF cells are produced from autologous, bone marrow-derived mesenchymal stem cells (MSCs) that have been expanded and differentiated ex vivo. MSCs are converted into MSC-NTF cells by growing them under patented conditions that induce the cells to secrete high levels of neurotrophic factors. Autologous MSC-NTF cells can effectively deliver multiple NTFs and immunomodulatory cytokines directly to the site of damage to elicit a desired biological effect and ultimately slow or stabilize disease progression. BrainStorm has fully enrolled a Phase 3 pivotal trial of autologous MSC-NTF cells for the treatment of amyotrophic lateral sclerosis (ALS). BrainStorm also recently received U.S. FDA acceptance to initiate a Phase 2 open-label multicenter trial in progressive MS and enrollment began in March 2019.

About The ALS Association
The ALS Association is the largest private funder of ALS research in the world. The Association funds global research collaborations, provides assistance for people with ALS and their families through our nationwide network of chapters and certified clinical care centers, and advocates for better public policies for people with ALS. The ALS Association builds hope and enhances quality of life while urgently searching for new treatments and a cure. For more information about The ALS Association, visit our website atals.org.

About I AM ALS
Founded in 2019 by husband-wife team Brian Wallach and Sandra Abrevaya, I AM ALS was born out of their desire to change the future for Brian and the thousands of other ALS patients in the world. I AM ALS brings together patients, advocates, organizations and scientists to deliver critical and innovative resources for patients, empower and mobilize patients and their networks to lead the fight for cures, and transform the public understanding of ALS with a goal of flooding the research pipeline with new, lifesaving drugs. A cure is possible … if we work together to re-imagine the fight against ALS. Learn more here: iamals.org.

About BrainStorm Cell Therapeutics Inc.
BrainStorm Cell Therapeutics Inc. is a leading developer of innovative autologous adult stem cell therapeutics for debilitating neurodegenerative diseases. The Company holds the rights to clinical development and commercialization of the NurOwn® technology platform used to produce autologous MSC-NTF cells through an exclusive, worldwide licensing agreement. Autologous MSC-NTF cells have received Orphan Drug status designation from the U.S. Food and Drug Administration (U.S. FDA) and the European Medicines Agency (EMA) in ALS. BrainStorm has fully enrolled a Phase 3 pivotal trial in ALS (NCT03280056), investigating repeat-administration of autologous MSC-NTF cells at six U.S. sites supported by a grant from the California Institute for Regenerative Medicine (CIRM CLIN2-0989). The pivotal study is intended to support a filing for U.S. FDA approval of autologous MSC-NTF cells in ALS. BrainStorm also recently received U.S. FDA clearance to initiate a Phase 2 open-label multicenter trial in progressive Multiple Sclerosis. The Phase 2 study of autologous MSC-NTF cells in patients with progressive MS (NCT03799718) started enrollment in March 2019. For more information, visit the company’s website at brainstorm-cell.com.

About ALS
ALS is a disease that attacks cells in the body that control movement. It makes the brain stop talking to the muscles, causing increased paralysis over time. Ultimately, ALS patients become prisoners within their own bodies, unable to eat, breathe, or move on their own. Their mind, however, often remains sharp so they are aware of what’s happening to them.

Original Press Release was posted here.

Katy’s Youth Action Challenge: Supporting Caregivers

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For Katy, her grandmother has always been a constant in her life – from Wednesday night family dinners to dropping her off at various sporting events. When Katy’s grandmother was diagnosed with ALS in 2018, things began to change, but the love they share only has grown to be more precious.

Katy is in 11th grade and currently an Ambassador in the Girl Scouts. She is starting to work on her Girl Scout Gold Award, and when brainstorming what she could do, ALS was the first cause to pop into her mind. Girl Scout Seniors and Ambassadors who earn the Gold Award tackle issues that are dear to them and drive lasting change in their communities and beyond.

For this project, Katy has decided to create a document of tips and tricks for the ALS caregiver. She has watched her family, especially her grandfather, adapt to various ways of caring for her grandmother and she knows that what they have learned could potentially help other people in the same situation. Katy will be working with her grandfather and reaching out to other ALS caregivers in her local community to compile suggestions to help others in the future.

Katy is used to visiting her grandmother every Wednesday, and due to COVID-19, her whole family has had to rely on group texting to stay in contact. Her grandfather even made a daily schedule so everyone knows who will be sending detailed updates on that day.

Over the past two years, Katy has grown to appreciate the little moments that she gets to share with her grandmother. Her advice for people who might be going through the same thing with someone they love is just to take every moment you get and be appreciative of what you have. The small moments you have with the people you love turn into the best memories.

There are so many ways for children and young adults to get involved and support people with ALS, especially through the ALS Youth Challenge. ALS Youth Action Day is on May 16th, but you can take the ALS Youth Challenge any day! By telling stories about your ALS hero, spreading awareness through social media, hosting a creative virtual event (like a dance-off), or fundraiser you’ll be showing the world that ALS needs to be cured.

Today is #GivingTuesdayNow

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#GivingTuesdayNow is a day when we give to causes close to our hearts, supporting nonprofits affected by COVID-19. In some way, you’ve been touched by ALS. Today is your chance to fight against it!

We Need Your Help.

Donate Now

The services we provide to people with ALS and their families are crucial. Because of the devastation COVID-19 has wreaked on the economy, the ALS Association of Texas is projecting a minimum loss of 50% which is close to $1.5 million.

Our ability to provide vital services to people with ALS and their families is at risk. People with ALS have lost so much already. Help ensure our programs are not lost, too.

It is not an exaggeration to say that I would probably not be still alive if it weren’t for the ALS Association.” – Laura, diagnosed with ALS in 2017

Today only, your donation has double the impact! Our generous partner, Respiratory Quality Services (RQS), will match every dollar up to $30,000.

We cannot let ALS defeat us. We must continue our fight. Your donation matters.

As long as I am able, I will raise my voice in the fight for those that no longer can.” – Sunny Brous Erasmus, diagnosed with ALS in 2015

Donate Now

Thank you to our generous sponsor, Respiratory Quality Services (RQS), for matching gifts this #GivingTuesdayNow. We are grateful for your continued support!

The ALS Association Continues to Push Development of Novel Treatments

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The ALS Association is excited to announce $2.5 million in grants to help develop promising new treatments for people living with ALS.

The grants are supported by the Association’s Lawrence and Isabel Barnett Drug Development Program, which supports drug discovery research in both academia and industry to develop new drug therapies and test them in a preclinical setting while moving those therapies closer to clinical use.

“This program funds preclinical projects aimed at developing treatments for ALS,” said Kuldip Dave, Ph.D., vice president of research at The ALS Association. “We anticipate that the agents and data generated from these projects will lead to the advancement of new promising therapies for ALS.”

While we continue to add new projects to this portfolio, these latest grant awards are showing a great deal of promise and hope for people living with ALS.

INmuneBio was awarded $500,000 allocated over two years to support proof of concept testing of XPro1595 for use in ALS therapy. XPro1595 has advanced to clinical testing for Alzheimer’s disease, but its use in ALS is novel. It targets immune dysfunction and inflammation by blocking the development of bad soluble TNF, a cell-signaling protein. The principal investigator for the study is CJ Barnum, Ph.D., director of neuroscience at INmune Bio. For more information, click here.

Peter Crouch of the University of Melbourne was awarded $495,176 to support animal testing of the novel use of copper-ATSM combined with follistatin. The proof of concept testing builds on the theory that effective ALS treatment could require drug cocktails, or the combination of multiple drugs and will occur concurrently to clinical testing already underway to test the efficacy of copper ATSM more generally. The ALS Association Oregon and SW Washington Chapter contributed $300,000 to the project.

Neuropore Therapies, Inc. was awarded $500,000 in support of their preclinical evaluations of NPT1220-312, a small molecule Toll-Like 2 receptor (TLR2) antagonist, as a potential ALS treatment targeting inflammation and the immune system. Early work in the area of TLR2 antagonists has been promising. This research will provide key efficacy and translational biomarker data, which will be used to drive a go/no go decision to transition NPT1220-312 to clinical development as a disease-modifying ALS therapeutic. The principal investigator for the study is Diane Price. For more information, click here.

Bloom Science Inc. was awarded a $500,000 grant to explore preclinical development of a Live Biotherapeutic Product used in the treatment of ALS. Bloom is leveraging its GOLD platform (Genetically Optimized Living Drugs) in combination with strong preclinical data to advance a new generation of therapeutics aimed at managing microbiota, or the spectrum of bacteria that naturally populate the human gut. They propose that the gut microbiome plays an important role in metabolizing the diet to liberate factors that ultimately protect against neurological damage that contributes to ALS pathology. The principal investigator of the study is Christopher Reyes. For more information, click here.

ImmunoBrain Checkpoint was awarded $499,413 to further studies targeting immune-checkpoint pathways, another therapeutic approach for ALS. The immune system, beyond its immediate role in fighting pathogens, is involved in supporting brain function, in health and in disease. In neurodegenerative conditions, and specifically in ALS, immune system failure is characterized along with disease progression. Currently, in advance stages of developing this approach for Alzheimer’s disease, these studies aim to collect biomarkers of the evoked immune response following treatment, which they believe are key for clinical translation of the results. The principal investigator on the study is Kuti Baruch.

Click here to learn more about The Association’s research commitments and the many grants made possible by the kindness and generosity of donors to the Lawrence and Isabel Barnett Drug Development Program.

Original blog post was published here.

Let’s Inspire Hope, and Show Texans with ALS that We’re In This Together

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Social distancing and shelter-in-place has quickly become the new normal for many people over the past few weeks, especially for people with ALS because they are considered high-risk. People with ALS can already feel isolated, as ALS can rob them of their mobility and ability to communicate, but now they are even more isolated as they try to keep safe in the face of a pandemic. With everything going on in the world today, so many people with ALS need of words of encouragement, hope, and the knowledge that we’re all in this together.

We are launching a campaign called #ALSinthistogether to bring the ALS community together to share messages of love and support. This can be an inspiring quote, a photo of an act of kindness, a video message of encouragement, or anything you can imagine conveying hope.

Starting April 20th, we’re challenging you to share your message of hope using #ALSinthistogether and show Texans with ALS that we are here for them, no matter what. Join us.

Here’s a few ideas to get you started:

  • If you’re a person with ALS or a caregiver, share how you are being supported by your loved ones.
  • Draw an inspirational quote in chalk on your sidewalk and take a photo to share.
  • Record a video of yourself telling a loved one with ALS that you are thinking of them.

Get others involved!

  • Encourage your neighborhood to put up signs of support in their windows for your loved one with ALS and share photos of their signs.
  • Ask your friends and family to record and share personalized video messages for a loved one with ALS
  • Post your message of hope on your favorite social media channels and include #ALSinthistogether.
  • At the end of your post, challenge your friends and family to create their own message of hope using the #ALSinthistogether.

We will be featuring #ALSinthistogether posts throughout the campaign. Please follow us @alstexas if you don’t already, and you might see yours!

We hope you will join us to inspire hope and let people with ALS know that we’re all in this together!

Noninvasive Ventilators Removed from Competitive Bidding in Big Win for ALS Community

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The Medicare program at the Centers for Medicare & Medicaid Services removed noninvasive ventilators from competitive bidding for durable medical equipment. The decision will keep the devices out of competitive bidding for at least three years and is a victory for ALS advocates. The ALS Association and its partners have led an intense lobbying campaign against competitive bidding for noninvasive ventilators for more than a year. The Medicare program cited COVID-19 in announcing the move.

The Medicare program initiated a competitive bidding program for noninvasive ventilators in March 2019. The ALS Association immediately began a campaign to make sure our community did not lose access to these medically necessary devices, as well as the clinical support provided by respiratory therapists. The Association locked arms with the American Association for Respiratory Care, the National Association for the Medical Direction of Respiratory Care, and other partners to call on the Medicare program to remove noninvasive ventilators from competitive bidding.

When the Medicare program refused to reverse course, the coalition fought for the introduction of the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act to leverage pressure from Congress.

“Our coalition primed the pump for this decision with an intensive lobbying campaign warning lawmakers that people living with ALS would be greatly harmed if access to this life support system and respiratory therapists were restricted based on lowest-price bidding,” said Kathleen Sheehan, vice president of public policy at The ALS Association.

“This is a win for our community, but the work to protect access continues,” she added.

The ALS Association will continue to advocate with CMS to update coverage policies to ensure access to NIVs and the essential servicing provided by respiratory therapists in the future.

To learn more about the devastating impact competitive bidding would have on access to noninvasive ventilators, read a column on the subject by Tommy May, a member of The ALS Association’s national board of trustees, who helped lead the effort to educate lawmakers on the issue in November.

The original blog post can be found here.

Travel the World Without Leaving Your House

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Social distancing has quickly become the new normal for so many people over the past few weeks. To a person with ALS, this is not that uncommon. Often times, people with ALS feel socially distanced, whether they are avoiding everyday illnesses or they have limited mobility and difficulty leaving home.

We have put together a list of virtual experiences that you can check out from your couch. From iconic Texas destinations to museums and concerts across the world! Take this extra time you have with your loved ones to create a new memory – even if it is virtually.

Texas Attractions
The Alamo
Houston Zoo Webcams
Dallas Museum of Art

Art & History
The American Museum of Natural History
Street Art Exhibition
The Louvre
Great Wall of China

National Parks
32 National Parks
The Hidden Worlds of the National Parks

Music & Theatre
Watch a Live Concert
Watch a National Theatre Play

Ocean & Wildlife
National Marine Sanctuaries
Great Barrier Reef

Stress Less On Purpose

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Our Director of Community Programs, Tonya Hitschmann, has been hosting ‘Stress Less On Purpose’ workshops across the state of Texas and last week hosted a virtual statewide session. With the new normal of connecting virtually, we felt like this was a great time to host this workshop and share these tips and suggestions with our ALS Texas community.

Stress comes from wanting things to be different – it’s really that simple. Every single day each of us is faced with a number of stressors we choose how we respond to those stress triggers is what makes the difference. Ask yourself.. why is this happening for me, not to me?

Today and every day focus on your why and your purpose. Think about the following four things. Focused Attention, Body Scan, My Why and Support.

Focused Attention

  • Pause and challenge your thoughts. Choose how you’ll respond.
  • Meditation: Choose any object; a small candle for example. Start with one minute and stay focused.

Body Scan

  • Breathing
  • Left nostril breathing to calm. Long, slow, deep breaths.
  • Check your heartbeat. Rapid-100+?

My Why

  • When I can no longer change the situation I am in, I am challenged to change the way I view it.
  • Knowing your WHY gives you a filter to make choices…that will help you achieve greater fulfillment.

Support

  • ALS Connection Groups
  • Friends
  • Family

Find simple ways to have less stress in your daily routine. Close your eyes. Breathe in and out ten times-concentrate. Imagine when you breathe in that it reaches all the way to your pelvis and lifts your abdomen. When breathing out, let the air come all the way from the lower abdomen and pelvis. Deep breathing relaxes the body and focusing on your breathing relaxes your mind.

Thank yourself for what you do. During the day, make small notes of all of the things you have finished. Collect the notes in a jar or on a table. When you go to bed, take a look at what you’ve written down and thank yourself for all of the big and small things you have done. Gratefulness induces positive feelings, which in turn adds motivation to activity.

Stress can cause pressure to the scalp and head area. By relaxing these “think areas”, you will begin to ease your reaction to stress. Rub your entire scalp with your fingers. Close your eyes and let the relaxed and good feelings slide through your whole body. This exercise is better with a friend, because of the oxytocin hormone related to another person’s touch.

We look forward to hosting more workshops like this one for our ALS community! Watch the full presentation below.

Register for an Upcoming Workshop