We are pleased to announce the addition of a fifth ALS multidisciplinary clinic in Texas. The Rio Grande Valley clinic opened on Friday, October 27 at Doctor’s Hospital at Renaissance in Edinburg, Texas. Headed by neurologist Zuka A. Khabbazeh, MD, the team met with and treated five patients on opening day.
After 46 years of teaching, Lois Albright retired, and she and her husband moved from their home in Brenham, Texas to Austin to be closer to family. Her daughters had been encouraging her to retire for many years, but she loved to teach.
“People who retire just get sick or have bad things happen to them,” Lois would say in response.
Just a few months after she retired, Lois was diagnosed with ALS in February 2017 – on Valentine’s Day.
Who would’ve thought?
ALS Texas commits to helping patients through recovery process
I’ve driven down I-45 toward Houston countless times, but this time was different.
Instead of normal business traffic, I was surrounded by trucks filled with bottled water, construction material, and other basic necessities. Pulling a load of supplies and medical equipment behind me too, I felt uneasy about what I would face when I crossed into Houston.
When I finally did so, one of the first things I noticed was that the devastation was different from block to block. We crossed one debris-lined street only to come upon another that displayed life as normal – houses untouched by the storm and people eating on patios outside of restaurants.
As Hurricane Harvey continues to affect people with ALS, their families, our staff, and our board members in Houston and the surrounding areas, we want to keep you informed of our efforts to serve them in this critical time. This disaster is likely to have a prolonged impact on the area, so we will continue to assess the unique needs and address them accordingly.
At this time, we are providing emergency financial assistance to people with ALS who are forced to evacuate their homes for safer accommodations. We strongly recommend that people with ALS do not flee to shelters, as health risks are heightened significantly in that setting. We are prepared to provide financial assistance for hotel accommodations and other safer settings. We are also in contact with FEMA and the American Red Cross to ensure that people with ALS are adequately cared for according to their unique needs.
It’s been said that if you want to move forward, you need to first look back – to remember not only where you came from but also where you need to go. As I look back on 2016, I am reminded of areas of great improvement, but I also see many opportunities for growth.
In 2015, the ALS Association of Texas increased its patient reach across Texas by almost 50 percent in one year. In response, we made many strides to grow our programs and services to fulfill our mission in 2016, including adding a new ALS clinic and loaning out the largest amount of equipment we ever have.
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.
$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.
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.
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.
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.