When Kristin Sedate’s father was diagnosed with ALS in 2014, she stepped in to serve as one of his primary caregivers. Read her story about their journey through ALS and what your donations meant to their family.
In Honoring One of Their Own, Buffalo Wild Wings Hopes to Help Many
Sha Groves lost her husband Greg to ALS in 2014, but continues to be involved with ALS Texas to help those currently battling this disease. Read her story about their journey with ALS and how Buffalo Wild Wings stepped in to help.
Robert Gregory Groves, better known as “Greg,” was a lovely man. From our first introduction, he seemed very quiet. He loved to observe and was quite the jokester. He started his career at Buffalo Wild Wings in November 2005 as an Assistant General Manager in Rosenberg, Texas. He worked his way up to General Manager and then was eventually promoted to Regional Manager. The company was under huge growth at the time, and he knew he had found his home. He was responsible for opening up several locations in Houston and the surrounding area.
One ALS Patient Shares Importance of Walk to Defeat ALS
David Cabe was diagnosed with ALS in 2015 and is an active participant in the Austin Walk to Defeat ALS as part of his team, Cabe’d Crusaders. Read about what participating in the Walk means for him and his battle with ALS.
As many of you know, I have ALS. This is a devastating disease. By the time I was diagnosed, it had already robbed me of the ability to walk unaided and was relentlessly taking away the ability to use my hands, swallow, speak, and breathe. But just knowing where to turn after my diagnosis was almost as daunting and overwhelming as the disease itself.
RQS Partners with ALS Texas to Provide Top Quality Respiratory Care to Patients
Respiratory Quality Services is a respiratory company focused on providing top quality services for all Respiratory Medical Home Equipment. RQS specializes in ventilation and secretion clearance of the neuromuscular patient population. RQS maintains a Gold Partner status of the ALS Association of Texas. Read more about how Keith Sanborn, President and Owner, got involved with ALS Texas and how it benefits his company’s work.
I had my first interaction with people suffering from ALS when I worked for Methodist Hospital in Houston. I worked with a pulmonologist who was treating numerous ALS patients. During my time there, I saw the increasing need for a respiratory durable medical equipment company outside of the clinic environment. Thus, RQS was born in October 2008.
Dr. Appel and the ALS Association Partner to Expand Multidisciplinary Care in Texas
Today, the ALS Association invested $50,000 into the Houston Methodist ALS Clinic led by neurologist Stanley H. Appel, MD, and recognized it as an ALS Association Certified Treatment Center of Excellence.
Dr. Appel has had a long-standing partnership with the Muscular Dystrophy Association and the collaboration among the three entities aims to provide top notch care to people with ALS, as well as provide maximum resources to patients and families. Many regular clinic patients were already turning to both MDA and the ALS Association for services. Dr. Appel’s top priority is the patient and making sure he or she has everything he or she needs, so when the opportunity arose for ALS Texas to partner with the Houston Methodist ALS Clinic, Dr. Appel agreed that it would be best for the patient.
New Gene Discovered that Contributes to ALS
$1 Million Grant from Ice Bucket Challenge Helped Spur Discovery
Today, researchers from Project MinE announced that they have identified a new gene NEK1 that ranks among the most common genes that contribute to ALS. The study revealed an association between mutations in the gene and ALS. The discovery of NEK1 gives scientists an exciting new target for drug development.
Approximately 10 percent of ALS cases are familial, meaning genes are inherited from a family member. The other 90 percent of ALS cases are sporadic, or without a family history. The NEK1 gene is present in approximately 3 percent of all ALS cases.
Congress Takes Action on ALS Priorities
Thanks to nationwide advocacy efforts, Congress is taking action on several priorities for the ALS Community.
The Senate Appropriations Committee passed the fiscal year 2017 Health and Human Services spending bill and included $10 million to continue funding to the National ALS Registry. The National ALS Registry is a congressionally directed registry for people in the U.S. with ALS. It is a program to collect, manage, and analyze data about people with living with ALS, which helps doctors and scientists learn more as they work toward a cure. It is the only population-based registry in the U.S.
FDA Approval Sought for New ALS Drug
Pharmaceutical company Mitsubishi Tanabe Pharma Corporation submitted a formal proposal to the United States Food and Drug Administration for approval of a drug to treat ALS. The drug, Edaravone, gets rid of toxic waste that is a normal by-product of cell function. It is thought that this waste is not as effectively removed in ALS patients, causing damage to motor neurons, which are the cells that die in ALS patients. Edaravone would protect these neurons by helping rid the cells of this waste.
The Edaravone new drug application is supported by clinical research with ALS patients in Japan, and in 2015, Edaravone was approved as a treatment for ALS in Japan and South Korea. After being submitted to the FDA for consideration, it could either be automatically approved for use in the U.S., or it could require a Phase III study conducted in the U.S.
Annual Motorcycle Ride Continues Fight, Legacy of ALS Victim
Whitney Sadler has organized Max’s Ride for ALS – a motorcycle ride through Texas Hill Country – for the past 10 years in memory of her friend Max. Read their story of friendship throughout Max’s fight with ALS and how Whitney carries on his legacy.
Max R. Harrison served in the Army and was part of the deployment in Desert Storm. He was an honorable, strong, loyal, blued-eyed guy with an incredible sense of humor. His mission began when he found out that he had ALS at just 32. His goal from the first day of diagnosis was to raise awareness of ALS and funding for research and patient services too.
Husband Donates $50,000 Annually in Memory of Wife
Frank and Barbara Ildebrando began dating on Barbara’s 16th birthday and would have been married for 48 years this May. They began their life together in New York, and in 1969 they moved to Texas and had three children – two boys and a girl.
In May 2014, Barbara first began showing symptoms of ALS. She and her husband went to the doctor, and when the doctor asked if Barbara had trouble lifting her legs, she said yes – a surprise to Frank.