Throwback Thursday: 2017 Mission Accomplishments

The ALS Association fights for people with ALS every day, leading cutting-edge research to discover treatments and a cure for ALS, and serving, advocating for, and empowering people with the disease to live their lives to the fullest.

In honor of Throwback Thursday, let’s look back at the advances in our mission areas of Advocacy, Care Services, and Research during 2017.

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Remembering Stephen Hawking, Who Inspired the ALS Community and the World

The ALS Association mourns the loss of Dr. Stephen Hawking and commemorates his life and legacy.

Hawking, a renowned physicist and best-selling author who famously studied black holes and whose life was depicted in the 2014 film The Theory of Everything, was diagnosed with ALS, also known as Lou Gehrig’s Disease, in 1963. The average life expectancy of person living with ALS is approximately two to five years after diagnosis and only 10 percent of people survive for more than 10 years.

He served as an inspiration for many in all walks of life, including people living with ALS around the world.

“Be curious, and however difficult life may seem, there is always something you can do, and succeed at. It matters that you don’t just give up,” Hawking once said.

ALS Association Board of Trustees Chair Stephen Winthrop spoke of Hawking’s impact.

“Most people describe ALS as a disease that, bit by bit, robs a patient’s ability to move and function. But Stephen Hawking has inspired me to focus on what I can do, rather than what my body can no longer do,” Winthrop said.

Guest Post: Patient Voices Matter

This guest post is from Shelly Hoover, EdD, a member of the Patient & Caregiver Advisory Committee, and does not necessarily reflect the opinions of the Association staff, its Board of Trustees, or its chapters.

By guest blogger Shelly Hoover

Patient voices matter, yet the collective ALS patient community has been too patient and too quiet for too long.

The ALS Association led an unprecedented effort to develop an FDA Guidance Document for Industry. Here’s a quote from the introduction:

“In February of 2015, The ALS Association launched this effort to develop the first-ever community-driven drug development guidance for ALS with funding from the ALS Ice Bucket Challenge, bringing together over 100 participants including people living with ALS, caregivers, researchers, clinicians, and industry experts from across the world to contribute their expertise and experience. In parallel with this effort, a committee was formed to update the ALS clinical trial guidelines that were developed more than 15 years ago. The guidance and guidelines have different audiences and different goals, yet are meant to be consistent. This guidance is intended to represent the Agency’s interpretation of, or policy on, evaluating new ALS therapies for approval in order to assist industry in navigating the regulatory process. The clinical trial guidelines incorporate stakeholder views across all phases of drug development, from preclinical to market approval, and serve as “best practices” for clinical trial design and are used by researchers and industry to provide structure and direction for the design and conduct of clinical trials in ALS. The goal of clinical trial guidelines is to lead to more effective and efficient trials, but they do not directly impact the FDA regulatory process.”

This guidance and the subsequent FDA document ALS: Developing Drugs for Treatment; Draft Guidance for Industry, are conservative and uphold the FDA’s gold standards for drug trial design and approval. That is great news for patients who will be diagnosed decades from now. Patients who are living with ALS today will not benefit in any significant way. As a person living with ALS, I find this conservative approach unacceptable.

I applaud The ALS Association ’s efforts. However, as a member of the patient advisory committee, I feel the patient voice was drowned out by louder voices in the development of the FDA Guidance. Read the last sentence in the introductory paragraph (bold emphasis mine). Are minor tweaks in trial design going to get potential treatments to patients now? And, why aren’t we pushing for changes to the archaic FDA regulatory process?

Here are two changes that the patient community can demand today:

  1.  Use historical controls instead of placebos until we have a widely effective treatment.
  2. Treatments in Phase 2 must be made available all patients. This will require changes to the FDA Expanded Access Program that currently does not incentivise nor protect drug manufacturers

You can make a difference by forming your own opinion and leaving a public comment here. Please do it today.

Let me be perfectly clear — this is not an ALS Association problem. The Association has multiple stakeholders, and the patient community played nice and our quiet voice got buried in the last pages of the The ALS Association Guidance Document (see Appendix C, of ALSA’s document). This is not an FDA problem. The FDA is upholding their gold standards of drug safety and approval. Why would they change?

This problem lies squarely on the shoulders of the patient community. We have the responsibility to speak out, speak loudly, and speak now. We need 1,000 public comments to get the FDA’s attention (101 comments have been submitted at the time of this writing). Then,  we must demand changes and do whatever it takes to save our own lives. If we don’t act now, we will die waiting for someone else to act for us.

About the Author

Shelly Hoover, EdD was diagnosed with ALS five years ago at age 47. She is an ALS Advocate, retired public school administrator, and US Navy Veteran. Shelly lives with her husband, Steve, in Northern California.

It’s #GivingTuesday

First there was Black Friday… Then Cyber Monday…

By now, you’ve probably heard of #GivingTuesday – the global day of giving back! And while it’s a great day to raise money for ALS, #GivingTuesday is trending on all social networks, making it the best time to share your ALS story. We’ll share your stories on our social channels in the hopes of inspiring others to join us in the fight against ALS.

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Every Father: Meet Tim

All month, we are featuring stories of individuals who are having an impact in the fight against ALS.

Meet Tim Ritter from Myrtle Beach, S.C. Tim is a husband, father, Navy veteran, professor and a person living with ALS. We recently sat down with Tim to learn about the most impactful moments in his life that has defined who he is today.

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Update: SUCCESS! Help Teach Siri About ALS Awareness

Updated on 5/11/17: 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.”

“What is ALS?”

This ALS Awareness Month, we want everyone to know the answer to that question.

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Modern technology makes it easier than ever for people get information about ALS. Unfortunately, people cannot learn about the disease through Apple’s popular digital assistant, Siri. The voice recognition program is an integrated part of all current Apple products and Siri reaches a huge number of people. For example, there are more than 80 million iPhone users in the U.S. alone.

Continue reading Update: SUCCESS! Help Teach Siri About ALS Awareness