• author
    • Cathy Speck

      Columnist, Photographer
    • September 17, 2014 in Columnists, News

    Walk will help ‘Defeat ALS’


    Cathy Speck is a tireless advocate for ALS awareness, and for helping to raise funds for research.

    PRESS RELEASE: Cathy Speck, Davis’ own Amazon ALS Advocate, and her team, The SPECKtaculars, are inviting everyone in the area to join them for some very meaningful fun on Saturday, Oct. 4. The Sacramento Area Walk to Defeat ALS will take place at Raley Field in Sacramento. Check-in is at 9 a.m., and the walk starts at 11 a.m. There is a 5k and a one-mile walk.

    So much more than just a “walk” (and roll), the Walk to Defeat ALS® is an opportunity to bring hope to people living with ALS, to raise money for a cure, and to come together for something you care about. The Walk to Defeat ALS® is The ALS Association’s biggest annual event, which raises funds that allow local chapters to sustain care services and support research for much of the next year.

    Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, is a fatal progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which includes muscles of the respiratory system. Over 90 percent of deaths come from respiratory failure.

    Rarely, ALS is caused be a genetic mutation. This 1993 discovery is to date the most significant finding in ALS research, but there is still no cure or treatment for families with ALS — fALS.

    “This disease has already killed four family members,” says Speck, who speaks at schools, colleges and churches about ALS. “Some members of our family inherited the genetic mutation from our mom’s lineage that leads to ALS.

    “Our mom died when she was 52, and I had just turned 13. Our brother Larry died in 2008, and brother Paul died in 2011. I ain’t dead yet.

    “Our SOD1 genetic mutation of fALS happens in only two percent of all ALS cases. This is the truth of ALS and who it hurts, and it’s why I’m asking you to donate to the Walk to Defeat ALS as soon as possible — it’s easy to forget. I do it all the time.”

    Every 90 minutes a person in this country is diagnosed with ALS, and every 90 minutes another person will lose their battle against this disease. Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more.

    More than half of all patients live more than three years after diagnosis. About 20 percent of people with ALS live five years or more and up to 10 percent will survive more than 10 years. ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.

    This cruel, devastating disease can strike anyone. Presently, there is no known cause of the disease, yet it still costs loved ones an average of $200,000 a year to provide the care ALS patients need.

    Help make a difference and donate or join a walk today. Speck believes the Walk to Defeat ALS is the perfect avenue to channel the love and energies of family, friends and colleagues who are determined to help us find a cure. The Walk happens once per year, and many have scheduled it as an annual fun, meaningful family and friends event.

    “Remember, your contribution makes a big difference as we continue our quest to end ALS and offer care to people suffering from this horrible disease,” says Speck. “Your support is needed now more than ever before, even though the Ice Bucket Challenge got so much publicity.

    “I could try to explain all the intricacies about financing research, but I have a feeling it would be long, boring and confusing. I fully believe the Ice Bucket Challege brought ALS out of the closet and we must keep it out — no more hiding this cruel, ugly disease in the shadows.

    “How do we do this? I’m open to ideas and I’m hoping for benefactors: I am designing T-shirts that are red with white print. The front has a stop sign shape over the heart and says ‘STOP ALS,’ and the back says, ‘KEEP ALS OUT of the closet.’

    “Many people think the Ice Bucket Challenge ‘raised enough money’ for ALS, but oh no, no, no. It’ll be at least a decade before we will actually have something helpful, and meanwhile, the day to day devastation continues.”

    The actual Walk on Oct. 4 begins at 11 a.m., but the event starts at 9 a.m. with registration, free coffee, fruit and pastries, entertainment, face painting, live music, and games to win prizes.

    “We love having lots of people walking with our team — it feels like a parade full of people celebrating living with gusto, and loving unconditionally. And you can make new friends — friends that might change the way you look at life.

    “Feel free to join in when I start to cheer and chant, and join me to make up walking songs, and play the percussion toys provided by The Specktaculars. I will hand out bubbles, Hawaiian leis, and team members can pick up their T-shirts from me before the actual Walk starts.”

    Speck is grateful for those who’ve already been supporting the annual walk.

    “I have been and continue to be so grateful for your support. In addition to funding research, each donation also goes to support the ALS Association chapter in our local community (ALSSAC ) which covers 24 counties. ALSSAC makes a huge difference in the lives of folks with ALS and their families, friends, caregivers and coworkers. The list goes on exponentially as you realize how just one person with ALS can intensely affect the lives of so many people.

    “The Davis/Sacramento Valley/ Bay Area communities create the generous, loving, supportive embracing arms that I feel wherever I go. And now those arms stretch throughout the US and into Canada.”

    Speck got a late start on her “ALS Walk-a-Thong campaign” this year. In May, she was diagnosed with metastatic neuroendocrine carcinoma. Because ALS has compromised her respiratory system, she knew surgery would be risky indeed. But she wanted to “make my decision about quality of life.”

    “In late July, I had surgery to remove a tumor that was basically suffocating my small intestine, along with my gall bladder and appendix which also were cancerous. They also tested 24 lymph nodes and 15 were cancerous.

    “My surgeon is brilliant and incredibly skilled. Now I know more than ever that each moment is precious even if it’s painful. Every day, I feel the prayers and healing thoughts that ‘held me up’ as I approached the operating room. I am blessed and filled with gratitude.”

    The ALS Association is the only non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, the ALS Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

    Those who would like to support the cause but can’t participate in the walk can send a check or money order payable to “ALSSAC” (write “Specktaculars” in the memo) to ALSSAC, 2717 Cottage Way, Suite 17, Sacramento, CA 95825. Donations are tax deductible: Tax ID, 68—159292.

    To donate online, visit Speck’s personal page: http://web.alsa.org/site/TR/Walks/Sacramento?px=3149044&pg=personal&fr_id=10154, or follow Walk to Defeat ALS prompts at www.alssac.org.

    For more information or to register for the walk, visit www.WalkToDefeat ALS.org or contact Rene Hamlin, Rhamlin@alssac.org or (916) 979-9265.

    To donate and join The SPECKtculars go to Speck’s Team Page: http://web.alsa.org/site/TR/Walks/Sacramento?team_id=308013&pg=team&fr_id=10154

    For more information about how to buy The Specktaculars’ team T-shirt, email Cathy Speck at speckduval@gmail.com or text/call (310) 508-7401

    For information about the Greater Sacramento Area ALS Chapter, visit www.alssac.org

    For more information about Cathy and her journey as she embraces ALS and all the love and compassion that comes with it, check out Cathy’s “blong” (a combination of “blog” and song”): www.cathydyingasliving.com

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