Look! Up in the sky! It’s a bird… it’s a plane… it’s SPECKtacular!
Cathy Speck (that’s me!) will be congratulating skydivers as they safely land at the 5th Annual West Coast SPECKtacular Skydiving for ALS event on Saturday, May 17, from 10 a.m. to 3 p.m.at Skydance, located at the Yolo County Airport, 24390 Aviation Avenue, 15 minutes west of Davis.
Speck was the first one out of the plane at the first Skydiving for ALS event in April 2010. Now, she wants you to jump out of a plane, and bring attention and money for ALS research — or not. Cheering for the skydivers and supporting this ALS event helps too. All proceeds go to research at ALS TDI (Amyotrophic lateral sclerosis Therapy Development Institute.)
Monday, May 12, 4 p.m., is the deadline to put down a $25 deposit to save your seat on the plane. Tell the folks at Skydance that you want to take your turn (after your training of course) by noon, if possible. Donations are welcome anytime at the event. Not everyone has to jump to join the cause to find a cure for ALS.
For the first time, three other ALS groups from nearby regions are partnering with The SPECKtaculars to create The 5th Annual West Coast SPECKtacular Skydiving for ALS. Last year, Gloria Samaniego Hale, (who has ALS and is confined to a wheelchair) and her supporters raised over $30,000 and are aiming for $75,000 this year for “Young Faces of ALS” (YFALS). Her group, Team Hale Yeah!, along with Team UCSF, is raising funds for YFALS.
The YFALS campaign was created by a small group of people living with ALS who share a disturbing characteristic: they all received their diagnosis before their 30th birthday.
The Mishork Misfits group is comprised of other families who have the SOD 1 mutation. This group was created to benefit the West Coast Skydive for YFALS taking place for the third consecutive year at Skydance Skydiving in Davis. They represent a family with an extensive history of familial ALS.
This cruel disease has yet to skip a generation of the Mishork family. Many members of the Mishork family, both living and deceased, are currently or were previously carriers of the mutant SOD1 enzyme, a known correlated trait of familial ALS diagnoses.
These groups will start skydiving at 9 a.m. The SPECKtaculars skydivers start at 10 am.
While event participants are still “tiny distant specks ” in the sky, friends and family will be on the picnic grounds celebrating the love and support they have for each other. There are picnic tables, sun umbrellas, restrooms, a skydiving gift shop, and a great viewing area to watch up-close as skydivers land.
“It is thrilling to be part of experience,” says Speck. “Join as at the barbecue with a $25 suggested donation, even if you don’t have money. You’re welcome to bring ice chests for your own picnic lunch, so that your donation goes directly to ALS TDI.”
Speck also emphasizes that “disabled folks, like, well, me, and my friend Gloria can skydive too — your “jump master” just needs to know a few days ahead of time to determine how to adapt the equipment. For special adaptations, contact Skydance, email@example.com or (530) 753-2651, 9 a.m. to 5 p.m.
For more information about this SPECKtacular event, or donations or potluck items, or to volunteer to help, contact Speck, firstname.lastname@example.org or send a text to (310) 508-7401.
More information is also available at http://community.als.net/SPECKtacular, where donations will also be accepted.
For more information about YFALS and Gloria Samaniego Hale, visit http://community.als.net/skydiveforYFALS).
About the event
Cathy Speck and her ALS Walk-a-thon team, The SPECKtaculars, hosted the first Skydiving for ALS Awareness event on April 25, 2010, with no plans of doing it again — Speck’s ALS seemed to be progressing rather quickly. But she surprised everyone, including herself, and with help from oxygenation and breathing augmentation, and ever-flowing love and support from the community, Speck and friends established the annual status for SPECKtacular Skydivjng for ALS Awareness.
“With help from The Davis Enterprise, The Davis Food Co-op, Emerson Junior High and Da Vinci students, the awareness factor bloomed into fertile soil perfect for growing funds,” says Speck. “And, don’t worry, you’re not gonna get shoved out of the plane all by yourself. You go tandem with your own personal ‘jump master’ strapped on your back for the flight — and that’s how it feels: like-flying. It’s almost a spiritual experience — a wonderful, unforgettable sensation.”
Speck explains how this spine-tingling event raises funds.
“We invite each jumper to find sponsors who want to support the ALS cause but don’t want to jump out of a plane, or who might live too far away to attend. We’ll be super grateful if you can get $500 from your community or your employer, or how about that $20 bill that you found crumpled in your pocket .”
The format of the event is similar to other FUNdraisers, from The Walk to Defeat ALS to The Ride to Defeat Leukemia, where participants ask people to sponsor them, and the sponsors can be at the spirited event or not.
“When we’re not in the sky we’ll be on the picnic grounds, celebrating the love and support we have for each other. It’s so amazing to watch our friends or anyone jump out of the plane and land safely. Then, when you ask them how to describe it, they can hardly find the words. You can also watch my skydive video on You tube: www.youtube.com/watch?v=2HPIIv1KnDg.”
Some say the fear of flying, or falling, is nothing like the fear of discovering you have ALS.
“When people an ALS diagnosis, it’s like being shoved out of a plane without a parachute and they don’t know what’s going to happen to them,” said April Kamen of Davis, who made her first skydive in 2010 to support Speck, her dear friend and Davis Food Co-op co-worker.
“That’s so tragic because it doesn’t need to happen that way, but the less people understand about ALS, the more fear steals their precious, limited energy. Ironically, because I know the disease so well, I had no fear. I’m very much at peace with dying, and the skydive experience was peaceful and liberally sprinkled with bliss. Everybody can have this — bliss. It’s there, it’s here. Allow yourself to feel it.”
Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a fatal progressive, neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body.
The progressive degeneration of the motor neurons in ALS eventually leads to death — usually from respiratory failure.
The most common form of ALS in the United States is “sporadic” ALS. Most people with ALS live two to five years upon diagnosis. About 10 percent of people with ALS survive at least 10 years. This variable rate of disease progression makes prognosis difficult to predict and therapies challenging to develop. It may affect anyone, anywhere, but it is not contagious — so go ahead and give Cathy and Gloria big hugs.
“Familial” ALS (FALS) means the disease is inherited. Only about 5-10 percent of all ALS patients appear to have genetic or inherited form of ALS. In those families, there is a 50 percent chance each offspring will inherit the gene mutation that leads to the disease.
“ALS already took our mom, our aunt and our oldest brothers, Larry and Paul. And then there’s me — I ain’t dead yet,” says Speck with a smile, despite the odds.
“In February 1971, my mom Dorothy, a mother of nine, was diagnosed with ALS. She was only 50 years old when the doctors finally identified the rare disease. One December 1972, less than one month after I had turned 13n, mom died in the Davis, California, our hometown. Our extended family, friends, and many people in the community were devastated.”
As part of an ongoing healing and letting go process, Speck is an “open book” advocate for ALS. She writes and speaks about the “whole picture,” and the effects of ALS that forever alter relationships with others and one’s self. She speaks freely (and for no cost) at public events, in churches, and classes from junior high schools to college classes. She shares her personal process of living and dying and thoughts of the afterlife. The feature story posted at saccityexpress.com/learning-to-love-life/ and this YouTube video, https://www.youtube.com/watch?v=00YK2nD85n0, make this event even more meaningful and inspirational.