Showing Up – A Mother Daughter Journey Through ALS

By Joanne Mattingly and Shannon Kennedy

My name is Joanne. I am 74 years old and was diagnosed with ALS September 2016.

My mother, Dorothy, had ALS and died in 1986.

As I navigated my illness, I reflected on my relationship with my mom when she was going through this. I remembered that I spent time with her, but we did not talk about her internal world.  She was a kind and loving person but was not comfortable sharing her feelings.

I, being of another different generation, quickly found out that this illness encourages me to grow internally and share who I am with my family and friends. Their visits, calls and cards raise me up.

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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.

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Mother Daughter Team – Jennifer and Savannah Beckerman Fight ALS Together

This year, Jennifer Beckerman received the 2017 Tom Watson Award For Courage from The ALS Association Mid-America Chapter at their annual Night of Hope. Hear Jennifer’s story and how her beautiful, 16 year old daughter, Savannah, is her ultimate support.

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Jay Curtis’ ALS Journey Through Poetry

Today, we welcome guest blogger Jay Curtis who shares his ALS experiences through poetry.

By: Jay Curtis, New York

I have been a proud member of the Writers Guild of America for decades. I spent most of my professional career as a promo writer/producer/director at CBS Television City in Hollywood. I also write poetry as a creative outlet. I write right-handed. In 2015, I was having trouble with my fingers curling up and with weakness in my right hand and arm. On December 1, 2015, I was diagnosed with ALS.

I decided to document my ALS journey in the series of poems and those poems are now a book titled, In and Out Dreaming, recently published by Lexingford Publishing LLC. It is available at amazon.com, barnesannoble.com and directly from the publisher.

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The National ALS Biorepository Launched – “Learn How to Participate”

By: Our Colleagues at ATSDR

One of the questions that people living with ALS often ask is – what can I do to help ALS research? People with ALS can do that, with a personal contribution to the National ALS Registry (Registry) – in the newly launched National ALS Biorepository (Biorepository).

The Agency for Toxic Substances and Disease Registry (ATSDR) launched the National ALS Biorepository as a part of the Registry in January 2017. This launch came after a pilot study that showed it was feasible to include a biorepository. The Biorepository is collecting biological samples from persons with ALS. It’s different from other biorepositories because it does not limit who can take part to a specific area, study, or clinic. This means that participants’ samples may help researchers everywhere work toward better understanding the causes of, and possible treatments for ALS.

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New Research Brings Help, Hope to People With ALS

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.

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This is an Exciting Time in ALS Research

At the largest-ever Drug Company Working Group meeting held in Boston in April, The ALS Association featured the first details of exciting new “antisense” target that may be relevant to most people with ALS, not just those with an inherited ALS gene. The meeting also featured reports from several companies that are forging ahead with novel approaches to ALS treatment. In addition, the meeting was the forum for the formal awarding of the Prize4Life $1 million Avi Kremer ALS Treatment Prize. Much of the work presented are direct results stemming from funding and academic-industry partnerships initiated by The ALS Association.

“With these many new treatments in development, this is an exciting time in ALS research” -Barb Newhouse, President and CEO of The ALS Association.

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