New Franklin women advocating for more ALS research
|New Franklin residents Judi Loomis and her daughter, Gretchen Freund, are pictured above during a trip to Washington, D.C., last year for the National ALS Advocacy Day and Public Police Conference. They are part of a national contingent who headed back to the capital this year to talk to legislators about the need for more funding and research on the disease.|
|Photo courtesy of Judi Loomis|
According to the ALS Association website at www.alsa.org, ALS is a progressive neurodegenerative disease affecting nerve cells in the brain and the spinal cord that eventually leads to paralysis and death. The disease strikes people between the ages of 40 and 70, and about 30,000 Americans are living with the disease at any given time. Life expectancy averages two to five years after diagnosis.
The disease is known as Lou Gehrig’s disease in honor of the baseball player who put a face to the disease.
Freund, 38, said she was diagnosed with ALS 10 years ago, but she went undiagnosed for four years before that.
Freund’s mother, Judi Loomis, with whom Freund lives, said the progression of the disease has been very slow for her daughter.
“It started in her legs, which eventually required her to wear braces, but for the last two years, she has had to use a wheelchair,” Loomis said. “Now the disease has reached her shoulders and it affects her speech. She went from an active person who liked to dance to someone who can’t dress herself.”
Freund said the most difficult part of the disease is “not knowing what the future is for me.”
“I have a lot of support from family and friends to help me through this,” she said. “My nieces and nephews mean the world to me, since I can’t have children, and just talking to them puts me in a better mood.”
Freund said there is only one medication available to help her cope, and it is supposed to extend her life by only two to three months.
“This disease has been around for so long and not much has changed,” said Loomis. “That is why we participate in ALS advocacy.”
According to Mary Wheelock, ALS Association Northern Ohio Chapter executive director, this is the 75th anniversary of Gehrig’s famous “Luckiest Man Alive” speech in July 1939, which addressed his disease in public.
“Since that time, there is still no cure and only one drug modestly extends survival. That is just not acceptable,” she said.
Wheelock said there are about 400 people in Ohio with ALS, and the cost is about $200,000 annually for each of these families.
She said the ALS Association’s efforts to increase awareness of the disease and more funding and research are stepped up in May, during ALS Awareness Month, which is designed to focus public attention on the disease, services and programs offered by the association; the global ALS research endeavors; and vital public policy efforts.
ALS Awareness Month activities include the National ALS Advocacy Day and Public Police Conference in Washington, D.C., which began May 7 and ends today, May 9.
Freund and Loomis traveled to Washington, along with representatives from all U.S. states, to talk to legislators about the need for more research on the disease through the Department of Defense (veterans are two times more likely than the rest of the population to develop ALS, they said) and support for the ALS registry through the Centers for Disease Control and Prevention.
“We need to keep them aware of all the people living and dying from this devastating disease,” said Loomis. “It is a forgotten disease because many die within several years.”
Wheelock said the conference in Washington also includes the first release of data gathered from the ALS registry since 2009.
The anniversary observance of the disease also includes a campaign that begins this month and concludes in July to raise money for cutting-edge research to find treatments and a cure for the disease.
To learn more about ALS, or to make a donation, visit www.alsa.org/75.
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