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.”
May is ALS Awareness Month!
Awareness is critical to our goal of ending ALS forever. The more people know about ALS, the more they get involved, and the more they support ALS advocacy and research. Through that support, we’ve made great strides toward finding potential treatments for ALS.
But we need your help to spread the word and keep the momentum going! It’s people like you who make everything we do possible. Here are a few ways you can take part in ALS Awareness Month:
At ALS Texas, we’re dedicated to serving people with ALS in any way we can. That includes running clinics, hosting support groups, providing grants, loaning equipment, funding research, educating people about ALS, and much more.
It’s only through the support of people like you that we’re able to do all this, and we want to thank you for helping make the past year a success. In 2016, ALS Texas provided more services to more people—about 25% more, compared to 2015. Here’s a look at the numbers that help show what we were able to accomplish:
Here’s a quick and easy way you can make a big difference and help ALS patients throughout the state of Texas: Through the Chevron Houston Marathon “Run for a Reason” program, people can vote online for their favorite Texas charity. Whichever organization receives the most votes between now and the marathon will win $51,000.
By simply voting for the ALS Association Texas Chapter, you could help us earn $51,000!
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.
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.
Juan Reyes and his wife Meg attended the ALS Association Advocacy Conference in Washington, D.C. this May.
My name is Juan Reyes, and I live with ALS. I was diagnosed in October 2015, but in hindsight, I started showing symptoms in late 2013. What began as slight weakness in my left hand grip and thumb has progressed to severe weakness in all extremities and includes difficulty walking and loss of balance. I now use a motorized wheelchair to get around, and many facets of my life have changed because of ALS. The big question, of course, is “Why me?” and “How did I get it?”
As you know, May is ALS Awareness Month, and this year, you will see a lot about advocacy and becoming an ALS Advocate. We are often asked what exactly this means, so we prepared a brief Q&A to help you understand how you can make a difference!
What does Advocacy mean?
It means stepping up for those who can no longer walk, speaking up for those who have lost their voices, and sharing your ALS story. While writing letters and meeting with members of Congress is part of this, all awareness is advocacy. Anytime you share your ALS story, you are helping to bring greater awareness to the disease and reminding people why we need their help to create a world without ALS.
Julia Dyer has served patients at the ALS Association of Texas for the past 12 years. As she moves on to pursue new opportunities, we wanted to take this time to thank Julia for her service to people with ALS and their caregivers. She wrote this farewell letter to the ALS community that beautifully describes the impact of her time with ALS Texas. Thank you, Julia.
The ALS community is unlike any other. I’m sure many people say that about an organization or group of people they completely admire and love, but really. Over the past 11 and a half years, I have learned some pretty valuable life lessons from people who were also learning as they went along. Not to mention, most would probably agree they had just received the worst news of their life. I witnessed families come together and rally harder than I’ve ever seen and show unwavering amounts of support and love.