ALS Texas

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.

Closer to a Cure: What is the KIF5A ALS gene & why is it important

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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.

While ALS is currently a disease with no cure and limited treatment options, the ALS Association continues to fund groundbreaking research to bring us closer to a cure. Last March, researchers from collaborative initiatives funded by The ALS Association, with money raised through the ALS Ice Bucket Challenge, announced the discovery of a new ALS gene- KIF5A.

You may have heard the news in the past year, but do you truly understand what the KIF5A gene is and why it’s important? If your answer is “no” that’s ok! That’s what we’re here for.

What is the KIF5A ALS Gene?

The KIF5A ALS gene was discovered through a unique collaborative effort of over 250 researchers, led by Dr. John Landers at University of Massachusetts Medical School and Dr. Bryan Traynor at the NIH. Researchers analyzed genetic data from over 101,000 samples to discover the KIF5A gene and it’s actually the fifth new ALS gene discovered since the 2014 Ice Bucket Challenge.

KIF5A, or kinesin family member 5A, is a motor protein involved in the protein cargo transportation in cells. Kinesins play an important role in transporting along a motor neuron axon, which is crucial to motor neuron health. Mutations identified in KIF5A may cause disease by interrupting that axonal transport.

Why is the KIF5A ALS Gene Important?

Identifying common pathways leading to ALS is an important part of creating new treatments to slow or reverse the progression of ALS. The more we understand about the mechanics of the disease, the closer we get to finding a cure.

ALS is a disease that’s incurable for now, but with more research we have hope that a cure will be discovered.

We Shot Out ALS at our 4th Annual Clay Shoot Tournament

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This past Monday, on March 25th, over 150 shooters gathered at the Greater Houston Gun Club for our Fourth Annual Shoot Out ALS Sporting Clay Shoot raising $141,185 to support the fight against ALS!

At the tournament we honored ALS Hero Steven Sykes, who was diagnosed with ALS in 2014. Before his diagnosis Steven enjoyed an active lifestyle- mountain biking, skiing, trail running and playing golf along with his two children and wife Laura. After his diagnosis he may have had to slow down physically, but he refused to let ALS stop him or his love for the outdoors. He continued to play golf well into 2016 and in 2017 he and his wife journeyed across the country in their RV to make the most out of the time they had left.

Steven Sykes, middle

“Regardless of the disease that is affecting you it is the people that surround you that effect how you live with the disease instead of die from it.” – Steven Sykes

After the clay shoot, guests enjoyed a fun-filled evening of cocktails, dinner, awards and auctions. Attendees bid on once-in-a-lifetime experiences like an alligator hatching trip, a seven day Pueblo Bonito Sunset Beach Golf and Spa resort trip for two, a guided airboat fishing trip and more!

Thank you to all of our guests and sponsors who made this incredible day happen, and for continuing to support the fight against ALS.

Interested in participating in the 2020 shoot? Check out the clay shoot event page for updates on next year’s event.

Interested in sponsoring the 2020 event? Contact Jon Bumann at jon@alstexas.org.

Serving in the Military Poses 60% Higher Risk for ALS

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For decades, researchers have been searching for correlations that may give insight into what causes ALS. While the direct cause remains elusive, there have been interesting findings over the years that could possibly bring us closer to a cure.

The ALS Association has released a new report highlighting the prevalence of ALS among military service members. In the 2019 ALS in the Military report, it was found that those who have served in the military are at a nearly 60% greater risk of developing ALS than those who have no history of military service. In addition, the data shows that ALS is connected to military service regardless of the branch of service or whether serving during peacetime or in war.

The report compiled findings from research conducted from the early 1990’s up until recent years with one of these studies examining  military members going back as far as 1910.  Finally in 2008, after many studies and decades of research,  the Department of Veterans Affairs established ALS as a service-connected disease. Since then, the average number of veterans living with ALS has increased by a staggering 30 percent.

“Study after study has shown that our military heroes are more likely to develop ALS, which is why it is critical that Congress fully funds the ALS Research Program at the Department of Defense, as well as research at the National Institutes of Health,” said Calaneet Balas, president and CEO of The ALS Association.

We’ve made strides and progress but we need more support to fund research that could help both veterans and non-veterans alike. ALS is a devastating disease but with your help, we’re well on our way to a deeper understanding and possibility of a cure.

New Leadership Model Furthers Mission in Southwest Texas

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Since our formation in 2012, the ALS Association of Texas  has been dedicated to serving and supporting Texans living with ALS. Over time we’ve seen an increase in the number of patients we serve 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.

Following the hires of our Houston and North Texas Regional Directors, in March of 2019 the ALS Association of Texas is thrilled to welcome Janette Surrett as our newest Regional Director, overseeing the Southwest Texas Region (from El Paso to Central Texas, Austin  to San Antonio, the Coastal Bend area, and the Rio Grande Valley). She’s the first to fill this new position and we’re excited to see how she drives the impact of our mission to best serve our community and support people with ALS and their families.

Janette has spent her entire career dedicated to non-profit causes and comes to the ALS Association of Texas with a wealth of knowledge and resources. Janette is thrilled to continue her work here with the ALS Association Texas Chapter as the Southwest Regional Director, and looks forward to joining a team of leaders dedicated to finding a cure for ALS as they serve, advocate, and empower those affected by the disease.

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 Janette at janette.surrett@alstexas.org with any ideas you’d like to discuss regarding The ALS Association’s work in the Southwest Region of Texas.

ALS Hero: Laura Weiss

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“ALS Hero” is a series focusing on highlighting notable PALS who have made an impact on their communities and the world at large.

In June of 2017 Laura Weiss was diagnosed with ALS. Since then, she’s become a tireless advocate for her fellow PALS! Laura’s active in many ALS-centered online communities, she’s a top Walk to Defeat ALS fundraiser and has already participated in two ALS research studies. Laura’s passion for helping others inspires her to offer whatever advice and experience she can share from her own situation.

I want to spread the word and educate everyone. I want to go to Washington and speak on behalf of everyone with ALS to Congress, Senate and the President. I want everyone to know the details of this disease so that more of an effort can be made to treat ALS with effective methods. It has been said that ALS is not an incurable disease, it just needs to have more money and energy focused on finding a cure.

-Laura Weiss

Join us as we honor Laura on April 5th, during our 5th Annual Under Ballou Skies Golf Classic & Party! Come join us for a sports themed tournament and an evening of food, cocktails, and a silent and live auction benefiting the ALS Association of Texas. We only have a limited amount of party tables and team spots left– so don’t miss out! Secure your table, or purchase your individual ticket today!

Register Today

Why The Five-Month SSDI Waiting Period For People With ALS Needs to Be Eliminated

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Pictured: Mary Johnson, Caregiver

Last week the ALS Disability Insurance Act was reintroduced in the 116th Congress. The bill (S.578) aims to eliminate the five month waiting period for disability insurance benefits for those with ALS.

Because of the nature of ALS, and how rapidly symptoms can arise and progress, people with ALS simply do not have five months to wait. They deserve their benefits, that they earned, immediately. Mary Johnson, a caregiver from Pennsylvania whose family has the genetic form of ALS, has lost 14 family members to the disease. One of those family members, her niece, passed away only four months after her diagnosis.

“Over the course of a five-month waiting period, people living with ALS will have only experienced progressive loss of function and will have incurred significant expenses for care and treatment,” said Calaneet Balas, president and CEO of The ALS Association. “We urge Congress to pass this legislation and remove the arbitrary five-month waiting period that creates an unfair financial burden on people whose life expectancy is so tragically abbreviated.”

Because of advocacy from our community, last year the bill was introduced and gained traction. Seven months later, for the first time ever, the bill was unanimously considered for passage through the senate. We have hope that this bill can pass, and we need your help to make it happen!

Ask your members of Congress to cosponsor this bill today to keep the momentum going!

Also tweet or share your support on Facebook, in order to spread the word. Together we can make a difference for people with ALS.

Tweet Your Support!

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ALS Hero: Steven Sykes

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“ALS Hero” is a series focusing on highlighting notable PALS who have made an impact on their communities and the world at large.

Through the years Steven Sykes has enjoyed an active lifestyle- mountain biking, skiing, trail running and playing golf along with his two children and wife Laura. In January of 2014 he ran and completed his last race, and later that year he was diagnosed with ALS.

Steven’s ALS diagnosis may have physically slowed him down, but it didn’t stop him or his love for the outdoors. He continued to play golf well into 2016 and in 2017 he and his wife journeyed across the country in their RV to make the most out of the time they had left.

“Regardless of the disease that is affecting you it is the people that surround you that effect how you live with the disease instead of die from it.” – Steven Sykes

Steven is truly taking life by the horns, and he’s our 2019 Clay Shoot Honoree! Join us on March 25th at the Greater Houston Gun Club for an afternoon clay shoot followed by cocktails, dinner, auctions and awards. Not a shooter? No problem! Dinner-only tickets are available for those who don’t want to shoot, but still want to support the fight against ALS.

Register Today

Voice Your Love: Hug a Caregiver!

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An ALS diagnosis can affect the entire family. As the disease progresses, and patients are able to do less and less, it’s family members that often dedicate their lives to caring for their loved ones. This is no small task, yet caregivers are not often praised or paid for the work that they do.

In fact, according to the National Alliance for Caregiving, in 2015 “An estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months.” This is a staggering amount of people selflessly providing care for those who need it.

That’s why today, on National Caregiver’s Day, we’re encouraging you to Voice Your Love for a caregiver. They dedicate their lives to caring for others and we want to use our voices to uplift these special people.