Fil-Ams among victims of debilitating disease
By Rhony Laigo
If not for the worldwide campaign of the Ice Bucket Challenge, the Amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease may have been just that – a disease that has no cure. But unknown to many, another debilitating disease that affects many, and ironically even the young, also needs the same kind of attention.
On September 20, American families, their relatives and friends, will do just that. They will troop to Long Beach for the Sixth Annual LA/OC Walk n’ Roll for Ataxia so more people may be aware of the relatively unfamiliar neurological disorder called ataxia, which simply means “lack of coordination.”
Starting from 340 S Pine Ave, the Saturday walk at Aquarium area in Long Beach will coincide with the International Ataxia Awareness Day. The 1K Walk n’ Roll for Ataxia Awareness in Long Beach is being hosted by the Orange County and Los Angeles Ataxia Support Groups, who will give away t-shirts to the first 300 participants present at the event. Organizers said there’s no registration fee, but donations are gladly accepted.
Personally, I know people here in Southern California who have been suffering from ataxia or the lack of muscle control because of this neurological disorder. One is close to Balita family and her name is Moira, whose mother, Saira Velasco, better known in the Philippine celebrity world as Bunny Paras, used to be our Advertising Manager for the Motoring Section. Saira had to semi-retire to focus on her daughter who was diagnosed with ataxia four years ago. Moira is only 15.
Two other friends of mine, back from my Novaliches days, the former Pamela Jacob who is now known as Pamela Ching, and her sister, Aileen Jacob, are also both suffering from ataxia. To be more specific, it is called SCA7 (spinocerebellar ataxia; there are several types). And that is not all. There’s more in their family.
Pamela’s twins – Catherine Joyce and Clarissa Janelle, aged 27 – are also both suffering from ataxia.
But that is not the worst part. Their brother in between, Manuel Jacob, died from it. Also a friend of mine, who first introduced me to the game of baseball, which we used to play at their lawn. And Aileen’s daughter also died from it, just last year. She was just 21.
To quote Pamela’s aunt, which Pamela posted on her Facebook Page, “It is truly inspiring that the ALS foundation fired up the people’s sense of generosity, but every time I see an ice-bucket challenge, I can’t help but feel a tug in my heart…a certain sadness actually because it is a reminder that to this day, another debilitating disease called Ataxia stays forgotten. Ataxia is a degenerative neurological disorder that affects one’s balance, coordination and sight. It is too close to home for me – my cousin, her two daughters and three granddaughters are all afflicted with this progressively worse disorder. It would mean the world to them if more people were aware of not only its existence, but the overall impact it has on the people who have it and their loved ones who witness its effects on a first-hand basis. Unfortunately, the medical community has not pursued any aggressive or significant research to find cures or relief for this disease. The biggest roadblock is the lack of awareness and funding. Let this be my personal rally and appeal to you to join us in the Walk n’ Roll to Ataxia and/or donate to help spread the knowledge of this all-too-common disorder that’s too commonly slipped under the rug.”
According to ataxia.org.uk, Spinocerebellar ataxia type 7 (SCA7) is a type of inherited cerebellar ataxia. “It is caused by a defect in a gene. This results in damage to certain parts of the brain and to the eyes.” Pamela’s sister, Aileen, apart from not being able to walk anymore, has also lost her sight.
In Saira’s daughter’s case, Moira, she is suffering another type. Friedreich’s Ataxia – a progressive disorder “mainly affecting the nervous system…of the spinal cord.”
Saira posted on her Facebook page this message: “As many of you may know, our daughter Moira was diagnosed with ataxia four years ago. I want to first of all thank you so much for your thoughts and prayers – your support has given us strength and hope for the future. We are attending the annual Los Angeles/Orange Country Ataxia Walk for awareness and donations that go towards a cure. If you have time please feel free to join us for the stroll along the bay next to the Long Beach Aquarium. And if you can spare a little to donate towards a cure, we’d appreciate it. Also, the more money we raise, the more tickets Moira gets to win prizes in the raffle after the walk!”
6th Annual LA/OC Walk n’ Roll for Ataxia
Saturday, September 20, 2014
Behind PF Chang’s at Shoreline Aquatic Park
340 S Pine Ave
Long Beach, CA 90802