Today, we sit down with Stephen Winthrop, our newly elected Chair of The ALS Association Board of Trustees to hear his thoughts on the fight against ALS and the role of The ALS Association in that fight. Stephen first joined the Association as a Trustee in 2015. He brings his expertise in fundraising, financial management, grant writing and information management services for non-profit organizations gained from a career in management consulting. He was diagnosed with ALS in November 2013 and immediately focused his energy on the fight against ALS. We are proud to be led by such a great leader and tireless ALS advocate.
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.
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.
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.
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.
Dr. John Ravits, Professor of Clinical Neurosciences and Head of the ALS Translational Research Program at the University of California, San Diego (UCSD) is a physician-scientist at the forefront of ALS thought and research of sporadic and familial ALS. Yesterday, at the 69th Annual American Academy of Neurology (AAN) Meeting in Boston, he was presented the prestigious 2017 Sheila Essey Award by Dick Essey, founder of the award named in honor of his wife Sheila who battled with ALS for ten years and died from the disease in 2004.
Over the course of his career, Dr. Ravits has emerged from the clinics where he cared for thousands of patients to formulate specific ideas about onset and progression of ALS and to take these ideas to create idealized models. His basic science research interests and contributions to science are far reaching from understanding the onset and progression of ALS in the body to exploring ALS neuropathology to functional genomics in motor neurons and more. Dr. Ravits also played an integral part in antisense oligonucleotide (ASO) therapy development for the most common genetic cause of ALS, the repeat expansion of the C9orf72 gene.
Families living with ALS are faced with a whole host of everyday challenges that can become a burden over time. The ALS Association created the Care Connection program to provide support to meet families’ needs to ultimately alleviate stress. Learn more about this extraordinary program and all the help it delivers.