|
|
|
|
 |
Q: What are the most commonly asked questions you hear from people with ALS? Dr. Kasarskis: The questions I get vary depending on whether you’ve just been diagnosed or have been dealing with the disease for awhile. But, I frequently am asked what causes ALS, how people can help themselves with good nutrition, and what exercises people can do. Most people ask for a sense of whether their form of ALS is faster or slower moving than average. People want to know whether their children and grandchildren are at risk, or if ALS is infectious and transmittable to a spouse or family member (which of course it is not). Many people with ALS wonder if they developed the disease from something in their environment such as a factory, a medication, factors at home, or extreme exercise, such as marathons or long-distance cycling. The ALS Association effectively lobbied Congress to establish a National Registry that may help us better understand whether some people may be more susceptible to certain environmental or lifestyle factors than are others. The ALS Registry Act, signed into law in October, 2008, requires the Centers for Disease Control and Protection (CDC) to establish a national registry to collect data on ALS and other motor neuron diseases by 2011. Each issue we feature a leading neurologist specializing in ALS responding to a question. If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@alsa-national.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.Exercise Helps Caregivers Stay Fit and Manage StressWhat with all the demands of caregiving, it may seem almost impossible to recommend that family members caring for people with ALS make time for exercise. But there are two solid reasons to make it priority: it builds fitness, and reduces stress. Researchers at Stanford University recruited 100 women who were spending at least 10 hours a week caring for a relative. The majority were spending an average of 72 hours a week caregiving.
In the study, half were told to either walk briskly in their neighborhood or exercise in their homes (using a video or stationary bike) for 30 minutes, four times a week. The other half were taught how to follow a low-fat heart-healthy diet, but weren’t asked to exercise. Among those in the exercise group, the biggest impact was in how the participants dealt with stress. They reported significant improvement in the quality of their sleep and their reaction to stressful situations. (The research is reported in the Journal of Gerontology, 2002, vol. 57, pp. M26-M36). The challenge, of course, is to find a way to exercise when there is so much else that must be done. And for most caregivers, getting out of the house is itself a challenge. Here are some simple fitness workouts people can do at home. (Of course, anyone who hasn’t been exercising should check with their healthcare provider before starting an exercise program).
Resources
|
 |
“We are honored and pleased to have the opportunity to join these four important organizations in an attempt to make progress in the fight against ALS, a disease that is associated with one of the greatest players in baseball history,” said Selig. “Lou Gehrig displayed tremendous courage and strength in the face of a debilitating illness, and his speech 70 years ago still stands as one of the defining moments in baseball history.”
Following is an excerpt from Gehrig’s famous speech:
“For the past two weeks you have been reading about a bad break I got. Yet today I consider myself the luckiest man on the face of the earth. I have been in ballparks for seventeen years and have never received anything but kindness and encouragement from you fans.”
On July 4, 2009, each home team will host an on-field reading of Gehrig’s Farewell speech. All players will wear a '4♦ALS' patch on their chest and MLB will promote the effort in a variety of ways, including in-stadium promotions. In addition, MLB.com will conduct an online auction to raise funds for the cause, and Major League Baseball will continue to work with the four organizations to identify additional opportunities to raise funds and awareness.
The ALS Association is a non-profit organization fighting Lou Gehrig’s Disease on every front. Through global research, providing assistance for people with ALS via a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.
 |
“The ALS Association is proud to partner with Major League Baseball and our ALS organization team members in this historic initiative to raise awareness and resources in the fight against ALS,” said Allen L. Finkelstein, chair of The ALS Association National Board of Trustees. “The ‘4♦ALS Awareness’ campaign provides renewed hope that Lou Gehrig’s greatest accomplishment will not be measured by statistics, but by the lives saved in his name.”
The ALS Therapy Development Institute (ALS TDI) has a single mission-to develop therapeutics that slow and stop ALS. With close to a $12 million annual budget, the nonprofit Institute has a 30 person research team working aggressively in its research center. ALS TDI is fulfilling its urgent mission by applying the best practices of a biotechnology company on behalf of today’s patients.
“ALS is a crisis. It is an unmet medical need. It has been labeled an incurable disease, but with the technology and expertise available now we believe this problem can and will be solved. This is exactly what is happening in our lab today. We are grateful to be part of this initiative and encourage everyone to get involved in the ‘4♦ALS Awareness’ campaign,” said Sean Scott, president of ALS TDI.
Augie’s Quest, MDA’s ALS research initiative, is an aggressive, cure-driven effort singularly focused on finding treatments and cures for amyotrophic lateral sclerosis (ALS). MDA funds over $23 million annually and more than $250 million since its inception.
“Major League Baseball is making a huge difference in the fight against Lou Gehrig’s disease through this July 4 effort,” said Augie Nieto, founder and chief inspiration officer for MDA’s Augie’s Quest. “Both in terms of public awareness and fundraising, the MLB contribution is significant and has a profound impact on the lives of people living with this devastating disease.”
The mission of Project A.L.S. is to create a new paradigm for neurodegenerative disease research. They identity the world's leading researchers and clinicians and mobilize them to work together as teams in the areas of Genetics, Drug Discovery, Stem Cells, and Disease Pathways. Each project they fund is vetted and approved by its research advisory board. Project A.L.S. has raised over $38 million to fund these efforts.
"Project A.L.S. is thrilled to partner with Major League Baseball and the ALS Community to forward research that will result in effective treatments and a cure. This is Lou Gehrig's legacy,” said Valerie Estess, founder and director of research of Project A.L.S.
The ALS Association has presented NBC News and KNBC Channel 4 News correspondent Jinah Kim, whose father fought ALS (amyotrophic lateral sclerosis), commonly referred to as Lou Gehrig’s Disease, with the prestigious Voice of Courage Award.
 |
The award also is given in recognition of journalism that stimulates greater public awareness and understanding of ALS and its devastating impact on patients, who, on average, survive from two to five years from the time of diagnosis.
“After witnessing the horrors of ALS first-hand, I promised myself I would do whatever I could to fight and help raise awareness about the disease,” Kim said. “I am very lucky that I am a journalist because it gives me an opportunity to give voice to a cause I am fervently passionate about; give voice to those who are losing theirs. This award means so much to me. I only wish my father could be here to witness the work his daughter is doing in his honor and memory.”
Kim was the overwhelming choice for the award. Her stories on ALS Awareness Month, military veterans with ALS, actress Angela Lansbury status as spokesperson for The Association, the late Paralympian Gold Medalist Nick Scandone and an artist and his daughter were well received by the public and resulted in greater support for The Association’s mission: to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.
In addition to her reporting duties, Kim also is the co-owner of WorldWise Productions, a video production company specializing in corporate and non-profit videos, based in Los Angeles.
Born in Seoul, South Korea, Kim immigrated to the U.S. with her family when she was six years old. She grew up in the Los Angeles area and attended UCLA, where she graduated magna cum laude and Phi Beta Kappa, with a B.A. in English Literature.
Her journalism career began with her high school newspaper, then her college campus newspaper Daily Bruin at UCLA. She was sure she wanted to become a newspaper reporter when she decided to intern at CBS News in New York during college. Her first job in the broadcasting was at KTLA in Los Angeles as an assignment desk assistant in the newsroom. She has also produced in Monterey, reported and anchored in Salinas, San Diego and most recently, in Denver.
Kim has a passion for languages and speaks, reads and writes Korean, German and Spanish. Her other passions include traveling around the world, reading anything she can get her hands on, recycling, literacy, ALS research and environmental causes.
For the second year in a row, The ALS Association has achieved a 4-star rating, the highest ranking possible assigned by Charity Navigator, the nation’s largest and most-utilized evaluator of charities.
 |
Charity Navigator’s team of analysts concluded that The Association excels in such areas as accountability, responsibility and transparency, essential information that donors can rely on when they contemplate making contributions.
“Based on the most recent financial information available, we have calculated a new rating for The ALS Association,” said Ken Berger, the president and chief executive officer of Charity Navigator, which was founded in 2001 and has assessed more than 5,000 charities. “We are proud to announce The ALS Association has earned, for the second consecutive year, our 4-star rating for its ability to efficiently manage its finances.”
Only 18 percent of the charities Charity Navigator rates have received two consecutive 4-star evaluations, said Berger, “indicating that The Association consistently executes its mission in a fiscally responsible way, and outperforms others charities in America.”
“The fact that people really pay attention to what Charity Navigator has to say makes this rating all the more important,” said Allen L. Finkelstein, chair of The Association’s National Board of Trustees. “When donors give to The ALS Association, they can be assured that they are helping one of the most highly respectable and reputable non-profit organizations in America today.”Charity Navigator’s review of The Association can be viewed at www.charitynavigator.org, a Web site, which is used by more than 4 million donors.
The ALS Association's mission is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support. Click here to contact your local chapter, certified center or clinic.
| Questions or comments?
E-mail webmaster@alsa.org or call 800-782-4747.
|
