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Advocates take to Capitol Hill to Inspire Change

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On June 9th-11th fourteen ALS advocates from Texas, along with our Executive Director and Sr. Director of Mission Delivery, made their way to Washington D.C. for ALS Advocacy Day. They joined 650 advocates from around the country to meet with lawmakers, share their ALS stories, and let members of Congress know why the time to act is now.

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

Our Priorities

The ALS Association is at the forefront of public policy, working to improve the lives of people living with ALS and their caregivers. This year, our legislative priorities included:

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

In addition to these priorities, the ALS Association is working to identify achievable ways improve home health access for people living with ALS through regulatory and legislative action.

Our Impact

During Advocacy Day, our advocates had successful meetings with lawmakers like Joel Heimbach, Ted Cruz (pictured above), Veronica Escobar, Jodey Arrington and more and we couldn’t be prouder of the representation and strides made for people living with ALS.

In great news- Representative Veronica Escobar (pictured above) committed to sign the “Dear Colleague” letter to oppose the addition of noninvasive ventilators to the Competitive Bidding program and she committed to signing onto the bill to eliminate the SSDI 5-month waiting period for ALS patients. She also expressed interest in attending the ALS multidisciplinary clinic at Texas Tech Health Sciences Center in El Paso. Thank you Representative Escobar for your listening ear and for standing with us on these important issues!

In more great news- Texas advocate John Wynn (pictured above) also met with Congressman Kevin Brady. Congressman Brady made this statement about his meeting:

Moving visit last week from veteran John Wynn and ALS advocates. Thank you to the ALS Association of Texas for your work to improve the lives of individuals like Mr. Wynn who are living with ALS. Texas has 11 clinics across the state dedicated to research and patient care, including one at Memorial Herman in Houston. Thank you for sharing your story, Mr. Wynn. I’m proud to support ALS efforts in Congress.

Thank you Congressman Brady for standing with those living with ALS and supporting our efforts to make a positive change.

Our advocates did an amazing job speaking for their fellow PALS on Capitol Hill. Since our time in DC one-hundred more representatives signed our “Dear Colleague letter” urging the opposition of non-invasive ventilators, making the total an impressive one hundred and eighty signatures – a testament to our advocates who attended the conference or sent emails throughout the campaign.

The House Appropriations Defense Subcommittee also approved $20 million in fiscal year 2020 for the DOD ALS Research Program (ALSRP) – doubling the funding amount. This is a huge achievement in a program area that rarely sees increases of such magnitude, and it is a direct result of the advocacy of The ALS Association and our advocates.

Are you interested in inspiring change for those living with ALS? Become an advocate today!

5 Years Later, The Ice Bucket Challenge Continues to Make Waves

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ALS Ice Bucket Challenge

In 2014, two men with ALS took it upon themselves to make a statement with simply a bucket, ice, and water. What started as a simple challenge quickly became a major movement that shed light on an often overlooked disease. Not only did the Ice Bucket Challenge spread awareness about ALS across the globe, it also generated $115 million for the ALS Association. There was nothing like the challenge before, and nothing like it since in terms of virality for a medical cause.

According to a report done by RTI, because of the Ice Bucket Challenge the ALS Association was able to increase our annual funding of research around the world by a staggering 187%- committing nearly $90 million around the world in research funding between 2014 and 2018. And since then we’ve been able to make major scientific advances (like discovering 5 new genes), expand care for those living with ALS (our clinical network saw a 50% expansion), and grow the federal government’s investment in disease research.

Five years after the Ice Bucket Challenge soaked the world, the pace of discovery has increased tremendously, bringing ALS researchers closer than they have ever been to real breakthroughs in diagnosing, treating, and eventually curing this disease.  –Calaneet Balas, president and CEO of The ALS Association.

Locally, the Ice Bucket Challenge had a tremendous impact on The ALS Association Texas Chapter and has enabled us to expand our services across the state. As a result of the challenge, we’ve been able to provide $300,000 in financial assistance to people with ALS and their families, established eight new clinic partnerships to provide crucial multidisciplinary care for patients, and have connected with 1,530 new people with ALS since 2014. We’ve also been able to improve our equipment inventory in our loan closet, to ensure more people with ALS have access to the equipment they need without the financial burden.

We’ve made so many strides since 2014 and we couldn’t have done any of this without your help! The Ice Bucket Challenge was unlike any other social media movement in terms of spreading awareness for a disease and we’re so grateful for each and every person who participated and for everyone who continues to advocate for those with ALS.

The ALS Association is committed to providing transparency and a painting a clear picture of our fund-allocation. If you’d like to see how money raised from the Ice Bucket Challenge has been used take a look at our ALS Ice Bucket Challenge Commitments page. Interested in diving deeper into the progress we’ve made? Read the report and learn more about the impact of the Ice Bucket Challenge here.

“We Walk For A Cure” – Jackie’s Story

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We know that participating in the Walk to Defeat ALS is no small feat and we’re in constant awe of how teams come together to help create a world without ALS. From walking to honor a loved one, to hope for a cure, each walker has their “why” that keeps them motivated and dedicated to the cause.

Loraine, Texas native Jackie Barry is a mother, grandmother, and wife. And in February of 2016, after struggling for months with a progressively worsening speech problem, Jackie also became a person diagnosed with ALS. “I have entirely lost my voice and my arms and legs are slowly getting weaker and I will eventually lose the use of them also.” she says. Although she notes that ALS is always fatal and currently has no cure she still has hope for a world without ALS.

When asked why she participates in the Walk to Defeat ALS Jackie says:

Research is underway and ongoing to find a cure, which is being supported and funded by the ALS Association.  The ice bucket challenge, together with the various Walks to Defeat ALS across the state have raised several million dollars toward research, development and aid to the victims of ALS and their families and care givers.

My family and friends have participated in the Austin Walk to Defeat ALS to help raise funds for research, patient care and the search for a cure for this dreadful disease.  It is a great chance to meet other victims of ALS, their family and friends and the 3 walks we have participated in have been on beautiful days in a lovely setting and a lot of fun for everyone.

Jackie also noted how the ALS Association of Texas has helped her in navigating through life with as a newly diagnosed person with ALS. “Less than a week after I was diagnosed Jennifer Beckett, Care Services Manager with the ALS Association, reached out to us to come and visit with us, look at our home and evaluate what we may have to do to modify it to be accessible for me as my condition progresses.” Along with Jennifer, she also sang the praises of Regional Development Manager Michelle Miller who she says “works tirelessly and enthusiastically to raise awareness of ALS and is instrumental in coordinating the various fundraisers each year, especially the Walks.”

I have never known a more dedicated, helpful, compassionate and hard working group than everyone associated with the ALS Association Texas Chapter.  I feel blessed to have met so many of them who are fighting endlessly to find a cure for this terrible, disabling and eventually fatal condition. Thank you for allowing me to speak out for myself and the numerous other people across the state who are suffering from ALS.  Come join us to help work towards a cure for ALS.

-Jackie Barry

What’s your why? What motivates you to keep walking? Email jacque@alstexas.org to share your story and inspire others, and register for your closest Walk today.

Register for Your Nearest Walk

Lil’ Linebackers Raise Nearly $4300 to Tackle ALS

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Here at the ALS Association of Texas we encourage everyone to fundraise your way by bringing your community together in creative ways for a cause! And Kimmie Longstreet and her Lil’ Linebackers are doing just that for ALS Awareness Month to honor their grandfather Brad Dusek- an ex-NFL Super Bowl Champion and person with ALS.

Brad’s nine grandchildren, the Lil’ Linebackers, gathered together on Youth Action Day, setting up multiple lemonade and ice tea stands while taking a pie in the face for every online donation. Together they raised nearly $4,300 in one day. We caught up with Kimmie to learn more about her “why” and how she’s making an impact in the ALS community:

Can you give us a quick intro about yourself? 

My name is Kimmie Longstreet, I am a stay at home mom of two little boys and the youngest daughter to an ex-NFL Super Bowl Champion who was recently diagnosed with ALS.

Can you tell us more about your motivation for creating your campaign? What inspired you to begin fundraising? 

My  motivation for fundraising for ALS was simultaneous to my father’s diagnosis.  There is so much unknown about this debilitating disease and so many people are unaware of the effects this disease has on not only the patient but all their loved ones and care takers.  The fact that the money we raise stays local to our region and we know where it is going and what it is being used for is helpful when asking for money.  Knowing that my father will be the recipient of the benefits of the money raised is huge.  Whether it be equipment or recipient to a new drug trial, or support for our family as we battle this disease with him, we know that our efforts are being realized locally to our loved one as well as other local ALS patients in our communities.

Have you done any fundraising in the past? 

My Dad was diagnosed at the MAYO clinic on September 21, 2018.  They told us about his diagnosis on September 24.  I had no idea how to help, I was still in the process of googling what ALS was when I came across the ALS association website and they were hosting an ALS Awareness Walk in Houston on October 13.  I signed up a team, Linebackers Tackle ALS, in honor of my father’s NFL position-linebacker.  We got our first donation on October 3 and by October 16, we had raised $10,419! My original goal was $500!! The amount of support we received really fueled our fight to tackle this disease that only weeks before had rocked our family to it’s core.  We were able to meet so many people during the walk and become part of such a great community, all in the battle against ALS.  We are looking forward to starting our team for the 2019 walk coming up again this fall and have big goals to raise even more this year.

Do you have any tips for getting little ones involved in fundraising? 

It was easy for us to get our kids involved.  My father has 9 grand kids who adore him.  They think his electric wheel chair is a personal go kart and his cool new minivan with electric ramp is a real life space ship. The silver lining in this entire situation is that this diagnosis of ALS has made our already tight knit family even closer.  We go out of our way to get dad involved in our kids events and make sure he is a part of everything we do.  We take a lot more pictures and celebrate the small things in a big way.  We are also all children of an NFL Super Bowl Champion, who played in the league for 10 years, to say we are competitive is an understatement.

The greatest lesson learned in all of this will be for them to see strangers, donating money to help their Grandpa. I know seeing this selfless act will leave an impression on their little hearts. -Kimmie Longstreet

Thank you so much Kimmie for all you do to support our mission of creating a world without ALS! Donate to Kimmie’s campaign here. Interested in creating a fun fundraiser yourself? It only takes a few minutes to get started!

Closer to a Cure: Researchers Open Enrollment for Tofersen Phase 3 Clinical Trial

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Our “closer to a cure” segment will highlight research news and important milestones made by researchers as they work towards finding a cure for ALS.

Exciting news! Neuroscience collective Biogen has initiated a phase 3 clinical trial to evaluate Tofersen (previously called BIIB067), a type of antisense drug meant to target superoxide dismutase (SOD1), for the potential treatment of ALS. 

It’s approximated that two percent of people living with ALS have a mutation in the SOD1 gene- the second most common cause of genetic ALS. An SOD1 mutation leads to abnormal protein, which is likely toxic to cells and could lead to the death of motor neurons- the cells that die in ALS. Tofersen has been designed to reduce levels of SOD1 protein in people with ALS caused by an SOD1 gene mutation.

The trial is currently enrolling with 60 spots available for people with SOD1 ALS.

Interested in enrolling and helping researchers test the safety and efficacy of Tofersen? The ALS Association has worked with Biogen to create a FAQ surrounding the trial. The FAQ covers how to enroll, where to get more information, study design and endpoints, expanded access, and more. See the FAQ here.

For more information about the clinical trial and its currently enrolling locations, visit: https://clinicaltrials.gov/ct2/show/NCT02623699.

Fundraise Your Way: Get Competitive!

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Here at the ALS Association of Texas, we’re dedicated to serving and supporting Texans living with ALS through advocacy, funding research, resources, equipment loans, clinic and more.  We’re only able to do what we do because of YOU, and we appreciate all the ways our community comes together to rally around our mission- creating a world without ALS. One of the ways our community supports this mission is through creative fundraising!

One example of a creative fundraiser is planning a sports-themed event and pitting teams against one another! Here’s what you’ll need to get started:

Pick a sport.

Doesn’t matter what you choose! Pick a sport you and your friends and family love playing and go from there. It could be dodgeball, baseball, golf or even frisbee!

Pick a location.

Ask permission to use a town recreation field, school, church gym, or other large open space. Or use your own backyard!

Find supporters.

Create a fundraising page or Facebook fundraiser to collect donations for your event.

Promote your event.

Use social media to spread the word about your event. While promoting share why you’re passionate about helping to create to world without ALS. Be sure to tag us (@alstexas) and use our hashtag #ALStexas so we can see all the amazing things you’re doing.

Gather supplies.

As your event day nears, collect any equipment you will need. Don’t forget things like water or snacks for your participants.

Have fun!

On your event day, remember to have fun! And take lots of photos/videos for social media!

Sports-themed events are a great way to sneak in some physical activity while having fun for a cause! Ready to lace up your sneakers and get started? Create a fundraiser today!

Meet Megan Cooley – Our New North Texas Regional Director

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The ALS Association of Texas has been dedicated to serving and supporting Texans living with ALS since our formation in 2012. Since then, we’ve seen major growth in our patient community which has led to a greater need for our services. This growth inspired a new on-the-ground leadership model in each of our three regions: North Texas, the Greater Houston region, and the Southwest Region. Regional Directors in each region oversee a team of care services professionals, fundraisers, and operational staff, bringing them together to best support patient needs and community fundraising.

The ALS Association of Texas is happy to welcome Megan Cooley as our new Regional Director in the North Texas area! Megan is a seasoned professional with 17+ years of experience in a variety of non profits, most recently a local domestic violence program, and prior to that with the Arthritis Foundation. Megan and her family are natives to their home state of Wisconsin but are no strangers to Texas and look forward to relocating back to the Dallas area. Megan has a bachelor’s degree in communications, a masters in organizational change leadership, and most recently received her certification in executive coaching. Welcome to the North Texas team Megan!

Patients all over the state deserve access to resources and care, and we hope to position ourselves to be able to reach those in more rural areas and beyond. We’re striving to provide every Texan living with ALS access to ALS clinics, support groups, durable medical equipment loans and other resources. With this new regional leadership structure in place, we are equipped to grow in our reach and impact. Feel free to say “welcome!” to Megan at megan@alstexas.org and send over any ideas you’d like to discuss regarding The ALS Association’s work in the North Texas area.

Fundraise Your Way: Build a Lemonade Stand!

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Here at the ALS Association of Texas, we’re dedicated to serving and supporting Texans living with ALS through advocacy, resources, equipment loans, clinic and more.  We’re only able to do what we do because of YOU, and we appreciate all the ways our community comes together to rally around our mission- creating a world without ALS. One of the ways our community supports this mission is through creative fundraising!

When it comes to fundraising the sky really is the limit, as there as so many inventive ways to get your community involved in a cause. One way that’s plenty of fun for the whole family is building a lemonade stand. Here’s what you’ll need to get started:

Pick a spot and a time.

Before pitching your stand, make sure you have whatever permits or permission you need to engage in commerce. Try to find a safe area with a lot of foot traffic and a time when people are likely to be thirsty- think lunch time or right after work!

Set a goal.

Aim high and shoot for the stars! Ask for donations rather than charging a set price for each cup. You’ll be surprised how generous people can be.

Spread the word.

Post information about your lemonade stand on social media and put up flyers throughout your community. Make sure you include a sentence or two about why you’re passionate about helping to create a world without ALS. Let people know they can donate using your ALS Texas fundraising page or Facebook Fundraiser, even if they can’t make it out to your stand. Use the hashtags #ALSYouthChallenge and #ALStexas when you post!

Gather supplies.

Make signs and gather pitchers, cups, straws, lemons, and sugar. Also be sure to grab a folding table and chairs. Need a recipe? Here’s a simple one you can follow!

Serve your lemonade and collect donations!

You can use a jar for cash donations, or direct people to our website to make donations in real time.

Lemonade stands are the perfect way to get little ones involved as well! Take a look at this campaign, with children honoring their grandfather with ALS for ALS Youth Action Day (May 19th, 2019).

Ready to roll up your sleeves and get started? Create a fundraiser today!

Meet Paige Ridout- Our New Greater Houston Regional Director

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Since forming in 2012, the ALS Association of Texas has dedicated itself to serving and supporting Texans living with ALS. Over time we’ve seen our patient community increase which, in turn, has led to a greater need for our services. This growth inspired a new on-the-ground leadership model in each of our three regions: North Texas, the Greater Houston region, and the Southwest Region. Regional Directors in each region oversee a team of care services professionals, fundraisers, and operational staff, bringing them together to best support patient needs and community fundraising.

The ALS Association of Texas is happy to welcome Paige Ridout as our new Regional Director in the Greater Houston area. Paige is a seventh generation Texan, spending her childhood in Beaumont, Texas. After eighteen years with the FISD Education Foundation, Paige has officially joined the ALS Association of Texas team and we’re so excited to have her on board to further support our mission in Houston and it’s surrounding areas.

Patients all over the state deserve access to resources and care, and we hope to position ourselves to be able to reach those in more rural areas and beyond. We’re striving to provide every Texan living with ALS access to ALS clinics, support groups, durable medical equipment loans and other resources. With this new regional leadership structure in place, we are equipped to grow in our reach and impact. Feel free to send your own personal welcome to Paige at paige@alstexas.org with any ideas you’d like to discuss regarding The ALS Association’s work in the Greater Houston area.

Golfers Raise $158,000 Towards the Fight Against ALS

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More than 150 golfers gathered at the Avery Ranch Golf Club in Austin, TX for a sports-themed tournament and an evening of dinner, drinks, and auctions during our 5th Annual Under Ballou Skies Golf Classic and Party! Under Ballou Skies is much more than a golf tournament, incorporating several sports-themed contests throughout a round of golf including shooting hoops with Hoops Austin, pitching with the Round Rock Express, and playing a little golf pong.

Together, by the close of the event, we raised $158,000 towards the fight against ALS – more than double the amount raised the previous year. Thank you to all who participated!

Bob Ballou

A staple of the tournament is Bob Ballou’s Ice Bucket Challenge at hole nine. CBS Austin Sports Director and ALS Texas Board Member, Bob founded the tournament in 2014 in an effort to combine his love of golf and sports with his passion for ALS. Each year, he takes donations at hole nine while participating in the Ice Bucket Challenge.

Laura Weiss and daughter – P/C Patty Hoenig- Front Porch Photography, L.L.C – ATX

This year, during our evening party celebration, we honored Laura Weiss as our ALS Hero. In June of 2017 Laura Weiss was diagnosed with ALS. Since then, she’s become a tireless advocate for her fellow PALS! Laura’s impassioned speech moved the audience and inspired others to take action in the fight against ALS.

P/C Patty Hoenig- Front Porch Photography, L.L.C – ATX

The funds raised at the golf classic go towards local care, supporting patients currently living with ALS, advocacy, and research, so that one day we can create a world without ALS.

Interested in sponsoring or playing in next year’s tournament? Contact Michelle or visit www.UnderBallouSkies.com for more information.