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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.
As the devastating effects of Hurricane Harvey continue to unfold, the ALS Association of Texas is working diligently to assess the well-being and needs of ALS patients and their families in the affected areas. This is our first priority – to ensure that our patients are safe and secure and that they can continue to focus on their health with as little disruption as possible.
This unprecedented disaster is likely to have a prolonged impact on those living with ALS and their families. And while the full impact can’t be known just yet, we are providing emergency financial assistance to those forced to evacuate their homes for safer accommodations. And we’ll continue to address these unique needs as they arise. If you or your family are in need of financial assistance, please contact us at email@example.com.
Below is a list of resources for people with ALS and their families who are affected by Hurricane Harvey. Please contact us with any additional questions you may have.
There are many ways, both big and small, to raise ALS awareness. Some people have used their filmmaking or public speaking talents to craft compelling stories of those living with this disease. From TED talks to award-winning documentaries, these videos inspire, educate, challenge and entertain viewers, while celebrating the lives of people with ALS and the contributions they have made.
Below are a few must see videos and films about ALS that are worth watching and sharing with family and friends.
Although children and teens are very unlikely to develop ALS, that doesn’t mean they aren’t affected by the disease. 85% of people who do have ALS report having children or grandchildren who are directly impacted. Coping with a parent or grandparent’s ALS diagnosis is never easy, but it is especially hard for children, who don’t have the same emotional maturity as their adult counterparts. Becoming a caregiver for someone is a difficult transition to make when you’re used to having that person take care of you. And since it’s unlikely that any of a child’s friends would have experience dealing with ALS, it can leave them feeling alone, with no one to really talk to.
Updated on 5/11: We did it! Thanks to your overwhelming support in petitioning Apple, Siri was updated in less than 24 hours. Now asking Siri, “What is ALS?” brings up the following definition:
“Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease and motor neuron disease (MND), is a specific disease that causes the death of neurons which control voluntary muscles.”
Based on information as of 5/5/2017
What is Radicava?
Radicava™ (edaravone) is a prescription medicine approved by the U.S. Food and Drug Administration (FDA) to treat people with amyotrophic lateral sclerosis (ALS).1
In clinical trials, some people given Radicava showed significantly less decline in physical function compared to placebo as measured by the ALS Functional Rating Scale-Revised (ALSFRS-R), a validated rating instrument for monitoring the progression of disability in patients with ALS.1,2
Radicava is First Approved Treatment for ALS in Decades
The Food and Drug Administration’s (FDA) announced today that it has approved Radicava (edaravone), the first new treatment approved specifically for ALS in 22 years. The FDA approved Radicava less than a year after Mitsubishi Tanabe Pharma Corporation submitted a New Drug Application. The only other approved treatment specifically for ALS, riluzole, was approved in 1995.
“We thank the FDA and MT Pharma for working together to expedite the approval of the first new ALS-specific treatment in decades,” said Barbara Newhouse, president and CEO of The ALS Association. “We hope today’s announcement signals the beginning of a new chapter in the fight against this terrible disease. There are several drugs to treat ALS currently in clinical trials and we are hopeful that people living with ALS have even more therapies available to them sooner rather than later.”
ALS is a devastating disease with no cure.
But researchers are working to change that. The increased awareness and donations provided by events like the ALS Ice Bucket Challenge—and by people like you—are making a real difference in the pace of discoveries, bringing us ever closer to the end of ALS.
Here are just a few examples of recent advancements in ALS research and technology: