Thank you to the over 600 people that descended on Capitol Hill on Tuesday during The ALS Association’s 2017 Advocacy Conference. So many advocates shared their stories to inspire their local legislators to support important ALS initiatives. Of those in attendance, 286 people were first time participants. Nearly every state in the country was represented, and most importantly, 128 people living with ALS made the trip to Washington, DC. Over 400 legislative offices were visited on both sides of the aisle.
Photo Highlights from a Day on the Hill:
Karolina Phelan and her two beautiful daughters Emma and Sophia from the Greater Philadelphia Chapter lost their husband and father to ALS. Hear from this special family sharing their story with Congresswoman Bonnie Watson Coleman.
Donate today to support the fight against ALS.
The ALS Association is at the forefront of the global research effort to find treatments and a cure for ALS. We believe that innovation and collaboration will be the key to winning this important fight. Only by coming together with others around the world who are experts in their fields will we make significant progress. We know collaboration leads to progress.
We’d like to let you know about an exciting opportunity for innovation in ALS called the Springboard Challenge. The Springboard Challenge is a planning grant award sponsored by Partners HealthCare and the Wellcome Trust and which was announced at the World Neuroscience Innovation Forum in London on March 27.
Continue reading ALS Springboard Challenge Launched
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.
Continue reading Showing Up – A Mother Daughter Journey Through ALS
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.
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
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.
Continue reading Mother Daughter Team – Jennifer and Savannah Beckerman Fight ALS Together
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.
Continue reading Jay Curtis’ ALS Journey Through Poetry
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.
Continue reading The National ALS Biorepository Launched – “Learn How to Participate”