An Article from May 2010

Musician Spreads Awareness of Lou Gehrig’s Disease at Events That Support The ALS Association’s Greater Sacramento Chapter

Cathy Speck

By Stephanie Dufner

Singer/songwriter Cathy Speck continues to perform in her band Duval Speck with her wife and musical partner Linda Duval, even though she was diagnosed with the progressive neurodegenerative muscular disease ALS in January 2009. She also holds frequent fundraisers in Davis for The ALS Association’s Greater Sacramento Chapter. Commonly referred to as Lou Gehrig’s Disease, those with the disease usually have a survival rate of two to five years from the time of their diagnoses.

The chapter has proclaimed Speck and Duval, who also serves as her band mate’s caregiver, the family that best exemplifies the spirit of “ALS Across America” for the Sacramento area during ALS Awareness Month in May. The “ALS Across America” national campaign recognizes courageous individuals with ALS and their caregivers who are role models to people with Lou Gehrig’s Disease. These special individuals reflect the spirit of the organization as they make a positive difference in their community by expanding awareness of ALS and embodying the spirit of living life to the fullest.

“Cathy continues to be a motivation and an inspiration to others living with ALS and people with any diagnosis,’ said Suzie Goodenough-Lawson, the chapter’s patient services coordinator. “She encourages others to not take anything for granted in life.”

Since being diagnosed with Lou Gehrig’s Disease, Speck has supported the chapter in myriad ways. She appears at two patient support group meetings in Sacramento each month and motivates other patients to make the most of living with ALS. Speck also participated in last year’s Sacramento Walk to Defeat ALS® where her Walk team, “Cathy’s The Specktaculars,” raised $16,178 for the chapter, the most money that a team raised for this event in Sacramento in 2009. Her employer, the Davis Food Co-op, also contributed the most money to this event as a “corporate sponsor”.

“Cathy was leading ‘sing alongs’ that inspired others during the entire Walk!” said Goodenough-Lawson.

The Walk to Defeat ALS, the Association’s national signature event, raises funds for research to find treatments and a cure for Lou Gehrig’s Disease and support services for people and their families living with the disease.

Prior to getting her diagnosis, Speck, who works as the safety director at Davis Co-op Natural Market, was quite familiar with ALS as what is known as familial ALS runs in her family. Her mother Dorothy Speck was diagnosed with the disease when Speck was 11-years-old, and her mom passed away two years later. Along with her dad Gene Speck, Cathy Speck and her siblings took care of Dorothy Speck as she was dying. Dorothy Speck was a shining example of how to live life to the fullest and how to die gracefully. Cathy Speck’s brother Larry Speck, for whom Cathy Speck and Linda Duval were the primary caregivers, also lived with the disease for two years until he passed away in 2009. Cathy Speck’s oldest brother Paul Speck was also recently diagnosed with ALS.

The Speck family has a rare SOD1 genetic mutation, E133A, which runs on her mother’s side. Each of Cathy Speck’s siblings has a 50% chance of inheriting the gene. Recently, two of her nephews were married and were planning families.  The fear of passing on the gene weighs heavily on their future plans.

According to Goodenough-Lawson, Cathy Speck considers her encounters with ALS a “blessing of sorts.” “It has connected her with what she considers to be really important in life,” said Goodenough-Lawson. “That is love and living with love every moment to make each moment count.”

When she is not working at the Co-op, Davis residents can see Cathy Speck making the most of her time by raising funds and awareness of Lou Gehrig’s Disease wherever possible, including her and Duval’s numerous musical events.  Also, Speck purposely decorates her walker and tricycle in an inviting way so that people aren’t afraid to approach her. When they ask, for example, “Were you in a car accident?” she then has the opportunity to educate people about ALS.

Throughout May, The Association and its nationwide network of 42 chapters will reach out to communities across the country to educate the public about Lou Gehrig’s Disease and urge people to join The Association in the fight to make ALS a disease of the past.

Duval-Speck will play music at local chapter events next month to expand awareness of ALS.

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