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ALS Advocacy in Glasgow: One Advocate’s Experience at the 29th International Symposium on ALS/MND

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On December 4th, 2018 ALS Advocate Sunny Erasmus  joined scientists, health care professionals, and other fellow PALS as they made their way to Glasgow, Scotland for the 29th international symposium on ALS/MND. During the 5-day symposium attendees and speakers shared information on the latest research, discussed future collaborations, and had discussions about patient care services. The ALS Association was also in attendance, joining other members of the International Alliance of ALS/MND Associations to exchange information about the care and support of people with ALS/MND everywhere.

Here’s a short summary of some of the panels Sunny attended during her three days in Glasgow: [Read more…]

How Sunny Erasmus is Raising Her Voice for ALS

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Since being diagnosed with ALS in 2015, right before her 28th birthday, Sunny Erasmus has become a warrior for others with the devastating disease. “There are many things that ALS has taken away from me”, she says, “but my voice is loud and persistent in the fight to end this disease”.

In May of 2018 she was one of 570 ALS advocates who made their way to Washington DC for the National ALS Advocacy Conference. There, people with ALS, their friends, and their families were able to make their voices heard and speak up for those who no longer can.

Twenty-two Texans traveled to Washington, D.C., in May to attend the National ALS Advocacy Conference.

At the conference advocates like Sunny learned about the latest ALS research, care service programs, and advocacy efforts to prepare them for meetings with Texas congressional staff and representatives. During those meetings advocates fought for public policy initiatives that would improve the lives of people with ALS, including:

  • Ensure at least $10 million in appropriations for the ALS Registry at the Centers for Disease Control (CDC).
  • Ensure at least $10 million in funding for the Department of Defense’s (DOD) ALS Research Program.
  • Support increased funding for the National Institutes of Health (NIH) in FY2019, especially in the National Institute of Neurological Disorders and Stroke (NINDS).
  • Pass the ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance.
  • Educate and influence Congress and Administrative officials to remove complex barriers to Medicare home health benefits for people living with ALS.

Sunny called the conference one of the most impactful experiences of her life, where she learned about what it means to be an advocate, what to advocate for, and the progress that’s being made by other ALS advocates along the way. “Keeping up energy and focus is hard”, she says, “but advocating for my fellow ALS soldiers has sparked a fire in me that will never go out”.

It’s advocates like Sunny that spark energy to create change in public policy and beyond. Interested in becoming an advocate? Sign up today!

 

Texans Travel to Washington, D.C., to Advocate for People with ALS

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Twenty-two Texans traveled to Washington, D.C., in May to attend the National ALS Advocacy Conference.

More than 570 ALS advocates from across the country joined together for the 2018 National ALS Advocacy Conference in Washington, D.C., on May 13-15. Nearly every state in the country was represented, with 22 advocates hailing from Texas.

Stacey Crowder was one of the Texans who went to D.C. to advocate for People with ALS. Stacey was diagnosed with ALS on August 11, 2016. He’d first noticed a slight twinge in his left bicep earlier that year, and when he received an ALS diagnosis, it took him and his family on an emotional roller coaster. At first, Stacey was devastated and scared, but he was able to cope by relying on his spirituality and the support of his friends and family.

[Read more…]

Raise Your Voice: Together, We Will Be Heard

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May is ALS Awareness Month. For the next 31 days, we will be dedicated to education about ALS and the important work we’re doing to find treatments and a cure. This month is also dedicated to advocating for people with ALS and their caregivers.

This year, Raise Your Voice to bring awareness to ALS. Even if you’re a person with ALS who has lost the ability to speak, you still have a voice. You can increase ALS awareness by sharing your personal story on social media, writing letters to members of Congress, donating to our mission, and using speech generating devices and sign language to talk to people about the issues people with ALS face every day.

[Read more…]

Offering Help, Hope, and a Voice to those Living with ALS

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By John Quinn

John and his family

Like many people with ALS, I first noticed symptoms several months before I was diagnosed. In December 2015, I was dropping my right foot when I walked and began fatiguing more easily than normal.

I went to multiple doctors and finally saw a neurologist who suspected I had ALS, and he recommended I go to Houston Methodist hospital. In May 2016, I went through a series of tests for two days at Houston Methodist hospital and was given an ALS diagnosis.

[Read more…]

First Recipient of Harrison Brown Volunteer of the Year Award Honored at the Austin Walk

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Whitney Sadler is the first recipient of the Harrison Brown Volunteer of the Year award.

We had the privilege of awarding the first Harrison Brown Volunteer of the Year award to Whitney Sadler at the 2017 Austin Walk to Defeat ALS.

The award honors the late Harrison Brown who lost his life in the stabbing at the University of Texas in May 2017.

[Read more…]

Update: SUCCESS! Help Teach Siri About ALS Awareness

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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.”

[Read more…]

Make a Difference This May

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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:

[Read more…]

ALS Advocacy Conference Gives Hope and a Voice for People with ALS

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ALS Advocacy ConferenceJuan 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?”

[Read more…]

What is ALS Advocacy?

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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.

[Read more…]