, 2022-07-22 11:06:00,
Jeffrey Cade, 46, the son of Jane Dignam, has ALSP, a rapidly progressive and fatal neurodegenerative disease, with onset between 38 and 48 years, Dignam said on Wednesday in Springville.
Without a bone marrow transplant within 1-and-half to two years Cade will die.
In trying to get a bone marrow donor his two siblings were tested, but also carry the same gene CSFR , one gene that causes ALS. ALSP is genetic and the whole family was tested with an MRI scan and genealogy testing. Dignam was negative but her children were positive.
Throughout the world there are 10,000 ALSP cases that are reported, but so often, like in Cade’s case, he was initially misdiagnosed as having Multiple Sclerosis, MS.
According to Dignam, 22 years ago, in 2000 and 2001, a medication that dramatically helped patients with ALSP was presented by doctors and patients to the U.S. Senate, but each time, the Senate determined they needed more information about the drug.
In the meantime people in that age bracket are dying in the prime of life.
A fundraiser with Sister’s of Hope Foundation END ALSP will be held on September 17 at the Porterville Fairgrounds, from 5:30 to 11 p.m.
The money for the fundraiser won’t go to Cade, it will benefit medical research.
There will be dinner, dancing, and a silent and live auction, with entertainment by the Classic All Stars and A.J. Fox from KSEE 24 News serving as the Master of Ceremonies.
The event will feature hors d’oeurvres, tri-tip and enchilada dinner and dessert by Catering With Noel. A no host cash bar will be provided by the Eagles Lodge.
For more information go to End ALSP Fundraiser Facebook page or https://sistershopefoundation.org/events/end-alsp-fundraiser/ Information is also available at http://www.eventbrite.com/e/end-alsp-fundraiser-tickets-339088261117
“It’s been a four year battle,” said Dignam,”and Springville and Porterville businesses have been so helpful in supporting our fundraiser on September 17.”
For more information call Dignam, 559-310-0237.
ALSP affects the cognitive thinking response, and there’s heaviness in the legs, along with markedly slurred speech. At onset Cade couldn’t talk properly.
And at first the doctors thought it was a stroke, and then they did more testing.
“He has now had 20 spinal taps,” Dignam said, “and they are painful.”
“He is so positive all the time, and…
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