ALS fundraiser rolls again


Jason Youmans Photo

Frank Norris holds a photo of he and wife Joan on one of their last nights on the town before Amyotrophic Lateral Sclerosis (ALS) stole her mobility.
By Jason Youmans
The Chronicle

Jul 24 2007


Two years ago, the quiet routine of Chemainus residents Frank and Joan Morris was shattered when doctors diagnosed Joan with Amyotrophic Lateral Sclerosis.

Today, Joan requires round-the-clock support to cope with the neuromuscular degenerative condition. The muscles in her throat have disintegrated to the point she can no longer speak or swallow. She is fed through a stomach tube and must rely on Frank and other caretakers to transport her weakened body to the bathroom and shower.

“What she has is a death sentence,” says Frank. “Now we’ve resigned ourselves to doing what we have to do.”

And what Frank has to do is offer constant support to his wife.

“I’m very limited in my own mind now,” says Frank. “When I go shopping, I always catch myself hurrying because I want to get home.”

Joan’s rapid decline is not unusual for those diagnosed with ALS, or Lou Gehrig’s Disease, as the disease was dubbed after the famous Yankees slugger was struck with it in 1939.

What began as an occasional loss of muscle control in one of Joan’s feet several years ago soon became all-consuming, The journey from diagnosis to death for ALS patients often takes less than five years.

“The way she was declining, I figured we might not have her here in June,” says Frank.

Most frustrating for Joan, who was finishing a social sciences degree prior to her diagnosis, is that her intellect and personality have remained fully in tact, essentially trapping her in a shell.

Joan can still communicate using an electronic keyboard, but when that device malfunctioned recently, Frank says the couple were resigned to comical games of charades as he tried to interpret Joan’s motions.

“There were no grey areas in my life,” says Frank, of the time before Joan’s diagnosis. “Everything was either black or white. I either liked something or I didn’t, and I would tell you. My wife has taught me to accept grey areas. I’ve come to understand maybe.”

On July 28 and 29, the fifth annual “On-a-Roll” relay will pass through Ladysmith and Chemainus, as ALS sufferers team up to raise the profile of the disease and drum up funds for the Vancouver Island chapter of ALSBC.

The event was dreamed up by Ladysmith resident Mike Pellatt in 2003 after he was diagnosed with ALS at the age of 41. Frustrated by the lack of government support for those suffering from ALS and the lack of resources available to those who care for loved ones stricken with the disease, he decided to take his concerns straight to the front door of the B.C. legislature.

His Island journey received widespread media attention and began to raise public awareness of the condition.

Pellatt has since succumbed to the disease, as has Duncan resident Rick Wilkinson who took up the Island-challenge when Pallett was too ill to make the journey. Port Alberni’s Bob Phillips, who rolled down the Island in 2005 and 2006 is too ill to make the trip this year, so it has morphed into a relay, with wheelchair-bound ALS patients making the highway trip in stages.

“I want people to know this disease is not some stereotype. It takes everything from you. But still, I figured out that you have to soak in as much as you can in this life,” says Phillips.

Since the On-a-Roll project began in 2003, $150,000 has been raised for ALS patient support services on Vancouver Island.

Transfer Beach will be the site of the Ladysmith festivities Saturday, July 28, when David Fox and Tommy Hamilton roll in after completing the Nanaimo-Ladysmith leg of the relay.

Beginning at 5 p.m. on the waterfront there will be a silent auction, as well as a giant bake sale hosted by the Ladysmith Family Practice Clinic, who recently lost one of their staff to ALS. They hope to publish a cookbook from the bake sale recipes to raise future funds for ALSBC. Mike Pellatt’s three-year-old daughter will be on hand, manning a lemonade stand in memory of her dad.

At 9 a.m. the next day the crew will set out from Fuller Lake Arena on their way to Duncan.

http://www.ladysmithchronicle.com/po...1031381&more=0

The second annual Angels for ALS Gala is scheduled for October 13th, 2007 at 6:30 pm. Last year, over 250 people attended with almost $90,000 raised benefiting Extra Hands for ALS and our research partner, the ALS Therapy Development Institute (ALS/TDI). This year we are reaching for 400 people to enjoy this beautiful night out. We will be honoring the student, mentor and family volunteers that make Extra Hands possible.


We are fortunate to be at the same venue at the Belmar Center in Lakewood, Colorado. Our sit down dinner will be presented by our friends at Gourmet Fine Catering. The evening will include silent and live auctions, dinner, entertainment and dancing all in a black tie optional theme.


Table sponsorships from $1,500 to our $10,000 are available with multiple marketing and recognition opportunities as well as individual tickets for $125. Click here for more details and online registration. If you did not receive a formal invitation last year, please respond to this posting with your contact information as soon as possible so we can include you in the mailings. We would appreciate you forwarding this posting to anyone that you think might be interested in participating in this incredible event as it is our main fundraiser for the calendar year.


If you are unable attend there are still many ways to participate. We are always looking for silent auction items and volunteers for the evening to help with all the details an event like this req uires. Also, if there are companies that could help offset the hard costs, i.e. venue and caterer, we would be honored to have you listed as event sponsors for marketing purposes. Please contact Steven or Jennifer Bishop at 303-423-3779 or email denver@extrahands.org for more information.


Of course, we always appreciate a donation of any kind which can be done online by clicking here or sending a check made out to Extra Hands for ALS at 8237 Swadley Court, Arvada, CO 80005. Lastly, thank you all for your continued support of ALS awareness, programs and research. It is your involvement in these issues that provides purpose and hope in our lives. We are humbly touched by your dedication and interest.

View At www.alsliving.com

Couple Bikes in Tandem to Help Find ALS Cure
July 26, 2007 - Jared Shelly, Staff Writer


Len and Susan Lodish surrounded by well-wishers after biking from Maine
For many interested in supporting a charitable cause, donating money or volunteering time is more than sufficient. But Len and Susan Lodish decided to add some sweat equity to that equation.
The 60s-something couple rode a two-seater bike from Maine to Philadelphia during a 13-day, 630-mile trek through rain, scorching heat, and a flat tire or two to support the Greater Philadelphia Chapter of the ALS Association.

The Wynnewood couple decided to raise cash for the charity after Len's cousin, Jules, was diagnosed with the disease more than 13 years ago. Now 63, Jules Lodish is paralyzed; he breathes with help from a ventilator and communicates by using his lip to move a cursor on a computer.

"Every so often, he sends us a note of encouragement," said Len Lodish, 63, who carried a laptop computer, among other possessions, that were housed in luggage strapped to the bike. "We really admire him a lot."

As the Lodishes pedaled their tandem bicycle along a brick-lined walkway at the University of Pennsylvania on June 18, a group of people cheered them on during their final few yards.

"I'm tired, my hind-end hurts, but I feel a pretty good sense of accomplishment," said a perspiring Len Lodish, a marketing professor at Penn's Wharton School.

The couple biked about 50 miles per day, and raised close to $100,000, according to Len Lodish. If the final tally exceeds that amount, they plan to match it with their own donation.

During the trip, the Lodishes visited laboratories and facilities dedicated to finding a cure for ALS, more commonly known as Lou Gehrig's disease.

"Every day has been a challenge. We had about four days of rain," said Susan Lodish, 64, a stage director. "But we put our rain jackets on and rode."

The couple -- who belong to Temple Beth Hillel/Beth El in Wynnewood -- have been biking for ALS every year since 1996, when they first traveled cross-country on a two-seater bike. They then tackled the 100-plus degree heat of China, and also completed stages two through seven of the Tour de France.

After completing this year's journey, the couple's combined donation to the ALS Association for their 12 years of bike trips has reached more than $750,000.

Last year, the Lodishes traveled to Israel and rode more than 600 miles, visiting places like Haifa, the Golan Heights, Beersheva and Jerusalem over 12 days.

"We know why they say 'going up to Jerusalem,' " said Susan Lodish, alluding to the hills surrounding the city.

Taking extended journeys also provides them with the opportunity to send notes and pictures to supporters, who pledged donations from all over the world.

"She sits on the back and takes photos instead of pedaling," Len joked about his wife, before admitting that "she's very strong."

Being on a tandem bike allows the Lodishes to take turns doing the hard work of pedaling. One person can work the legs hard, while the other can "rest" by allowing their feet to move around.

During this year's ride, the husband and wife wore matching red, black and white uniforms, and even celebrated their 42nd anniversary by going out to dinner in Rhode Island -- after a full day of biking, of course.



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