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The fast, efficient and diverse capabilities of the program enhances the overall volunteer experience by making participants feel more involved and committed. Whether it is preparing traditional holiday meals, shopping for decorations, taking the person with ALS and/or the dog for a walk, or just keeping someone company until the fulltime caregiver returns, Lotsa Helping Hands volunteers can make an important difference in the lives of people battling the disease. “These fabulous volunteers who participate in Lotsa Helping Hands create a loving atmosphere for many in the ALS community,” said Sharon Matland, The Association’s vice president of patient services. “People with the disease can spend stress-free time with their friends and families, not have to worry about entertaining guests and not feel lonely.” Lotsa Helping Hands is part of The Association’s Care Connection pilot program (see story in Hope Magazine Fall 2006 issue), which provides tools and training to families on how to create volunteer networks, encourage people to get involved and coordinate care. “The ALS Association is always on the look out for innovative programs that improve the quality of life for people living with ALS and their caregivers. This definitely caught our eye,” Matland said. Brain Waves Might One Day Control
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The BrainGate Neural Interface System involves placing a tiny panel of electrodes, half the size of Lincoln’s head on a penny, onto the surface of the brain. This microelectrode array reads signals from the motor cortex, the region controlling limb muscles.
The first ALS patient tested has demonstrated control over a computer cursor just by thinking about moving the cursor. The lead investigator in the trial, Leigh Hochberg, M.D., Ph.D., of Harvard and Brown University, working with the Boston area company, Cyberkinetics Neurotechnology Systems, Inc., reported at the Society for Neuroscience meeting in Atlanta, October 14-18 and showed a video of the patient’s efforts.
The approach requires surgery to place the microelectrode and therefore can risk injury or infection. Researchers hope to develop a way to lessen the impact by using telemetry to make the connections to translating machinery without the need for a connecting wire.
The hope is for ALS patients to be able to have more control over their surroundings when they lose the ability to move their own limbs or to speak. Hochberg will present results and the video at The Association’s Leadership Conference in Newport Beach, Calif., January 25-27.
“While researchers continue to search for therapies to significantly slow the disease, there is still a tremendous need for new technologies that can help improve the lives of people living with ALS,” said Lucie Bruijn, Ph.D., science director and vice president for The Association. “The recent advances with brain interface technologies give us hope that it is possible to develop a technology that will be easy to use and that can restore a sense of independence and improved quality of life for many people who are unable to move or talk.”
Other ways to read brain signals are being explored that are also relevant to ALS. At the neuroscience meeting, one approach reported allowed an ALS patient who cannot move or speak to spell out words by means of scalp electrodes. The electrodes read a certain signal generated by brain waves. This approach, studied at the Wadsworth Center in Albany, N.Y., does not require surgery.
All of these approaches give hope for maintaining quality of life as researchers continue to explore the many routes toward an effective therapy to slow progression or repair damage in the disease.
The ALS Association has created a new online forum that allows people in the ALS community to easily connect with each other, share experiences and ideas and join a “virtual community” that is participating in the advocacy efforts that can help find a treatment and cure for ALS.
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The community has a number of features, including discussion boards on specific topics such as Medicare and National ALS Advocacy Day, as well as tools that identify people who have joined the community from across the state and across the country.
Community members also can create individual blogs to share experiences and ideas with others, invite comments and questions, add online web logs and post photographs.
Blogs posted by community members, including The Association’s Advocacy Department, which posts the latest information and action alerts on advocacy efforts in Washington D.C., also can be read.
Most importantly, the Virtual ALS Advocacy Community is a resource for learning how to participate in the advocacy efforts that can make a difference in the fight against ALS. |
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Items available on the eStore include sports-themed polo and t-shirts, a 2007 calendar featuring the vibrant paintings of the artist Peggy Chun, who has lived with ALS for the past four years, and ornate Christmas ornaments made of glass.
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“At this time of year, The ALS Association offers thanks to those who have continually supported us,” said Gary A. Leo, president and CEO of The Association. “We’re looking forward to giving those people the opportunity to shop online during this busy season.”
Proceeds from the sale of eStore merchandise will go to The Association.
The online music merchandising firm BandMerch, Inc., has donated its services to create apparel, fulfill online orders and host and maintain the eStore. BandMerch’s president, Donn Delson, decided to partner with The Association as his father passed away from ALS in 1999.
Many of The Association’s chapters are slated to open eStores in early 2007. |
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Boston Red Sox pitcher Curt Schilling with “Jeopardy” host Alex Trebek. Schilling, who, along with his wife Shonda Schilling, have raised more than $5 million for The ALS Association, appeared on “Celebrity Jeopardy” on November 9 to raise money for The Association and the Shade Foundation. People with ALS and their families were among the members of the audience for the taping of the quiz show at the world-renowned Radio City Music Hall in New York City. “Celebrity Jeopardy” shows aired between November 8 and November 21 and featured 30 popular stars with each celebrity participant guaranteed to earn a minimum of $25,000 for their charity.
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Mary Finke, a lifelong Lincoln, Neb., resident who has ALS, was officially presented with the wheelchair actor James Woods used on an episode of NBC’s “ER” titled “Body and Soul” at the Walk to D’Feet ALS held by The ALS Association’s Keith Worthington Chapter. She also received the seat cushion that was signed by Woods and members of the cast and a letter the actor wrote to her. Sherrie Hanneman, regional development director for the Keith Worthington Chapter, read the letter to Mary Finke, husband Wain Finke (gray sweatshirt) and to all those in attendance.
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E-mail webmaster@alsa.org or call 800-782-4747.
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