Jason Walker, Galena, Ohio
Jason Walker has beaten the odds in living with ALS. Doctors told Walker he had the neurodegenerative disease in early 2004; people typically live two to five years following their diagnoses. During his eight years of life with ALS, Walker has spread awareness of the disease in his community through collaborating with The ALS Association’s Central & Southern Ohio Chapter.
Annie Kress and Jason Walker
To recognize his efforts, the chapter is honoring Walker and his girlfriend and caregiver Annie Kress during ALS Awareness Month for the annual “ALS Across America” campaign.
“Jason is a resilient, determined man who has lived many years with ALS,” said chapter Executive Director Marlin K. Seymour. “Although ALS has affected his speech, hands and arms, and his step is not quite as fast as it once was, he continues to live his life with gusto.”
Walker’s dogged determination has repeatedly impressed Seymour and her colleagues. Shortly after being diagnosed with ALS, Walker, 36, picked up red ALS awareness wristbands from the chapter and handed them out to people he met in his job as a bartender. He has accompanied Seymour and others from the chapter to meet with state representatives, where he discussed the need to fund research and local services. Walker also shared his own personal experiences in dealing with the disease as well as the challenges and difficulties those with ALS encounter in their daily lives.
“Coming directly from the mouth of someone who is living in this ‘ALS experience’ day by day, legislators and their staffers tend to listen to and consider requests far more closely,” Seymour said. “I felt indebted to him for being willing to be vulnerable and share such personal matters even as hard as it was for him to keep telling his story over and over again.”
Those meetings with the Ohio State Legislature led Seymour to invite Walker to take part in the chapter’s delegation in 2009 at the National ALS Advocacy Day and Public Policy Conference in Washington, D.C. Once again, Seymour said that Walker effectively represented people in Central & Southern Ohio living with this devasting, degenerative illness for which there is still no known cause, effective treatment or cure.
According to Seymour, Kress has also alerted others about the impact Lou Gehrig’s Disease has. A senior at Otterbein University in Columbus who is majoring in business, Kress recently completed a non-profit management course for which she interviewed Seymour. “By focusing her class project on ALS and the chapter, Annie helped raise the awareness level about ALS to her professor and to her class,” Seymour said. “She was also able to share with them that a local chapter exists to help serve and support people with ALS and their families in the community.”
Seymour said Walker and Kress will assist the chapter during May and in the coming months to collect 500-plus signatures and commitments from Ohioans to purchase a special ALS organizational license plate that will spread awareness of the disease in the Buckeye State. Once the measure collects the necessary signatures, local delegates—including Walker and Kress—will approach State Senator Jim Hughes to introduce legislation asking for the state to produce this unique plate. Seymour added if state representatives approve the legislation that part of the funds generated through the sale of these license plates will go toward ALS research in Ohio.
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