ALS Texas

ALS Drug Slows Progression, Petition for FDA Approval

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The New England Journal of Medicine (NEJM) has published the results of a phase 2 trial (known as CENTAUR) of the compound AMX0035, produced by Amylyx, a Massachusetts-based pharmaceutical company. The results of the trial were very promising – people with ALS receiving this drug experienced a significantly slower decline in disease progression, compared to those on a placebo. Additionally, this drug shows to be safe and well-tolerated indicating a positive benefit and risk consideration for people with ALS.

The ALS Association and I AM ALS have now issued a petition calling on the drug company and the FDA to make the treatment widely available as soon as possible. The ALS Association and I AM ALS are asking that Amylyx and the FDA move with urgency to ensure this drug is a treatment option for all people living with ALS.

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The ALS Association committed $750,000 to Amylyx in funding for this research, and $1.4M to the NEALS clinical trial consortium to support the trial. These grants were made possible through the ALS Ice Bucket Challenge. The trial included 137 people with ALS and was conducted across 25 top medical centers through the Northeast ALS (NEALS) consortium. All of the participants enrolled in the trial were diagnosed with sporadic or familial ALS within the previous eight months and had a rapid progression of the disease.

With a typical survival time of between 2 to 5 years, people with ALS cannot wait for the full experimental process of this drug to continue. In light of the substantive data of AMX0035’s effectiveness and safety, it has been requested that the FDA and Amylyx to work together to bring this to people with ALS as soon as possible by approving the drug prior to a Phase 3 trial. To access and sign the petition, visit www.als.org/petition.

Sign the Petition Today!

Support ALS Research at the 11th Annual Cure ALS (Virtual) Golf Tournament

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Paul and Kathy Tavano are no strangers to ALS. In August of 2009, Paul was diagnosed after having symptoms of weakness in his hands and muscle spasms. When he and his family heard the projected lifespan of 2-5 years after an ALS diagnosis, and how there was nothing they could do about it – they wanted to take action. CURE ALS was formed and they have since set out on a mission to change that outcome, if not for their family, for others somewhere down the road.

“When you are diagnosed, friends and family want to help but there isn’t much they can do. So we got together with a few of our close friends and we were all golfers and had been to different charity events and felt that we could put on an event and raise funds that we would earmark for research. I was very adamant that I didn’t want it to be for me, and that I wanted it to be towards research. This year will be our 11th tournament, but this year it will be virtual,” said Paul Tavano.

As the 11th Annual CURE ALS golf tournament was approaching, Paul and Kathy kept hearing that research labs and non-profits were struggling because of the lack of funding and how fundraisers were being canceled due to covid-19. They sat down and said, “ALS isn’t going to stop, so neither are we.” This year the CURE ALS golf tournament is now a virtual one. So now anyone around the country can participate, and the hope is that not only will there be more golfers, but more people becoming aware of ALS and the need for research.

“The hope is that the research that is going on will show and develop treatment and help extend the life of those who have the disease. It may or may not help me, but it will help someone down the line. I hope that somehow, someway we have been able to make a difference, and hopefully, we will be able to see that difference,” said Paul.

The Tee Up to CURE ALS virtual tournament is September 11-25th and registration is open! If you aren’t sure how to help someone you know with ALS, this is a great way to show your support and have a little fun!

“Our tournament has always been about raising funds for research, having fun, and allowing the collective group to hear what is new about ALS research. Virtually you can have fun and help support research for ALS,” said Paul.

Register Today!

For more information about CURE ALS, visit WeWillCureALS.com

2020 Mid-Year Update: We’re Here for Texans with ALS, No Matter What.

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In March, COVID-19 changed everything. Like others, we had to adjust the way we were operating, while finding ways to continue to deliver care to our ALS community in Texas. Because of your support, we have been able to work closely with Texans with ALS and their families to continue helping them navigate the disease and provide them with crucial resources.

Here’s an update on how your support has impacted Texans with ALS during this time.

Local Care

Our team works to provide resources and support to people with ALS and their families. Your support enabled us to continue this work, counseling newly diagnosed patients and helping Texans with ALS navigate the disease.

From February-July 2020:

938 People with ALS are Registered with Our Chapter
(compare to 887 at this time in 2019)

168 New Patients
(compare to 160 new patients during this same time in 2019)

1,065 Total Patients Served
(compare to 1,207 total in all of 2019)

Learn more about our Local Care Programs.

Equipment Loans

Our Equipment Loan Program provides crucial medical equipment to people with ALS, free of charge. COVID-19 impacted this program significantly, and due to safety concerns, we were unable to access and deliver much of our equipment in our loan closet. We were purchasing new equipment to continue to meet the needs of people with ALS, but saw our funding dwindle rapidly. We asked for your help, and through your support, we were able to get the funding needed to continue this vital program. Now, we’re working with our partners to deliver needed equipment in a safe manner, and ensuring people with ALS have the equipment needed to navigate their everyday lives.

From February to July, 2020:

243 Pieces of Equipment Loaned to People with ALS

If you are a person with ALS or caregiver who needs help with equipment, please contact us.

ALS Multidisciplinary Clinics

Many of our ALS Multidisciplinary Clinics had to cancel regular clinic days due to COVID-19. As time has progressed, each clinic has modified their operations to best serve the safety of their community. Some remain closed until is a vaccine in place, some are allowing individual visits, and some have put new safety measures in place to enable clinic days. We’ve been working closely with our clinic partners to help keep our ALS community safe and ensure our presence as a resource for Texans with ALS and their families.

We partner with 11 ALS clinics across the state of Texas. You can see the latest update about clinics here.

Staying Connected

Gathering in-person is not an option for our ALS community, as people with ALS are high-risk. To stay connected from afar, we moved all of our support groups to virtual groups, which have continued to meet monthly. In addition, we moved planned in-person educational presentations and workshops to virtual platforms and made them available statewide.

From March-August 2020:

80 Virtual Support Groups, Workshops, and Presentations

500+ People Engaged in Virtual Events

You can view our upcoming virtual events here, and watch recordings of past events.

New Family Programs

We’ve been closely listening to our ALS community to determine our impact and discover areas where additional resources are needed. Two big needs have emerged: greater support for caregivers and programs for youth and children. This year, we have started rolling out these programs virtually, despite the challenges of the pandemic. These include:

  • Workshops for caregivers to help manage stress and tips for self-care
  • Workshops for multiple age groups of youth and children to help them cope with the diagnosis and care of a loved one
  • Bereavement support group
  • Caregiver morning coffee support group
  • Youth Leadership Council

Interested in learning more? Contact us.

Looking to the Future

In the face of the pandemic, because of your support, we were able to shift to virtual support groups, overcome challenges to get medical equipment to people with ALS, and create new programs to support  caregivers and families.

Thank you for your continued support. Together, we can create a world without ALS.

Get Involved

Interested in helping us create a world without ALS? Join the Walk to Defeat ALS (at Home), start a fundraiser or donate today.

Join the Walk to Defeat ALS (at Home)

Start a Fundraiser

Donate

Help Us Unlock ALS Across the State of Texas

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At the ALS Association of Texas, people with ALS and their families come first. To ensure the safety of our ALS community, this year, the Walk to Defeat ALS is wherever you call home. On October 31st, for the first time ever, people from across the state will walk on the same day, making a huge impact across Texas and showing that together, we can create a world without ALS. Host your Walk to Defeat ALS at home with your friends and family – walk, run, ride, or drive to defeat ALS.

This year, we wanted to add in some fun ways to achieve fundraising milestones! We have created a Walk to Defeat ALS Bingo card to help motivate everyone to accomplish more goals and have a little fun.

There are two ways to enter your name into the raffle! Fill up your card in the shape of a T as one entry, or unlock your full bingo card for two entries. Prizes will include an Amazon Echo and gift cards!


Download the Bingo Card here!

Join us – together we will celebrate, honor, and remember our loved ones with ALS. Learn more about the 2020 Walk to Defeat ALS through our Walk Town Hall below.

The ALS Texas Equipment Loan Program: Helping the Hilliards Stay One Step Ahead

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ALS is a devastating disease, and as it progresses people lose the ability to walk, speak, move, and breathe. Here at the ALS Association of Texas, one of our most important initiatives is our Equipment Loan Program. This program allows our ALS community access to various equipment they may need throughout their journey with this disease. Equipment is expensive but it gives a person with ALS much-needed freedom and mobility back, so being able to offer a program like this is instrumental to the life of a person with ALS.

One of the big things about this disease is staying one step ahead so that when something happens, you have the equipment you need right there waiting for you.

“Some things happen suddenly, and you’re not prepared. To be able to have the ALS Association local chapter be there and reach out and say ‘here’s my need’ and have that need met is huge,” said Tamara Hilliard.

As ALS progresses, each persons needs are different. When Tamara’s husband, Jim, a person with ALS, was no longer able to walk and needed a power wheelchair, our team had luckily already provided them with a Hoyer lift. At the time, Jim was still able to walk with a walker, and only sometimes needed a chair. One day Jim had a bad fall and broke his knee. Suddenly, they needed a safe way to get him in and out of bed. Thankfully, they had that solution waiting for them in the garage, so Tamara, Jim’s wife, was able to care for and transport him safely. From that point on, he was chair-bound, but they didn’t have to worry because they had the equipment they needed to get him from the bed to the chair.

“Life’s precious – there’s not much time when you’ve been diagnosed with a disease like ALS,” said Tamara. “I think it’s important to support the closet, and support helping families get the equipment, even if it’s temporary until they can get their own. It meets a real need for ALS patients because of their health and their physical decline are continually changing.”

COVID-19 has created many limitations in the management of our equipment loan program. Our team is not able to deliver or pick-up as many items as we usually can, nor purchase much new equipment for Texans fighting ALS. Donations will help get the Equipment Loan Program operating back at full capacity as we seek to provide lifesaving equipment to people with ALS.

DONATE NOW

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!