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Q: I’ve recently been diagnosed with ALS. Should I be taking lithium? Dr. Kasarskis: I would encourage you to get into a clinical trial on lithium and be a part of testing its safety and effectiveness. Lithium has been around a long time used as a treatment for bipolar affective disorder -- but we don’t know if it will specifically benefit people with ALS. The original study, done in Italy, was flawed. The ALS Association and several funding partners are supporting a major clinical trial to determine if lithium can slow disease progression in patients with ALS. The new study will be placebo-controlled and double blinded (which means neither patients nor physicians know who will be getting Lithium and who will be getting a placebo). The results of that effort should give us an answer if lithium is effective and safe. However, if you can’t participate in a clinical study on Lithium, deciding to take the drug without waiting for the results of the study is a personal choice you should make with your physician. Until we know more, we cannot be certain if the drug will offer a benefit, do nothing at all, or even do harm.
Amanda Watson Raising Awareness
by Gary Wosk, Staff Writer |
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“Amanda is one of those rare, precious jewels who is always sparkling with enthusiasm,” said Gary A. Leo, the president and CEO of The Association. “She will reign in our hearts forever as someone who truly cares about finding a cure for Lou Gehrig’s Disease. We wish her the very best in every quest in her life.”
Watson, who is a rising senior at the University of North Carolina at Chapel Hill, is used to a frantic pace. She used her titles of 2006 Miss National Sweetheart and Miss Garner North Carolina in 2007 and 2008 to raise awareness for ALS. She even gave a speech and sang in 2006 at the candlelight vigil held as part of The Association’s National Advocacy Day and Public Policy Conference, which is held every May in Washington, D.C.
After her latest triumph in Raleigh, N.C., Watson addressed the North Carolina House and Senate and spoke to the media about finding a cure for ALS as well as her involvement with the Jim “Catfish” Hunter Chapter of The Association.
“I cannot begin to put into words how proud we are of her,” said Jerry Dawson, the president and CEO of the Jim “Catfish” Hunter Chapter of The Association about Watson. “She has attended countless Walks, she and her dad held a golf tournament and she has given personal testimony to members of Congress.”
Watson strives to exemplify her favorite quote: “Use what talents you possess. The woods would grow silent if no birds sang except those that sang best!” which was written by American author Henry Van Dyke.
Social networks such as MySpace, Facebook and YouTube are not just used by college kids anymore; ALS Association pages on these sites are being visited by a variety of age groups, all encouraged to join the organization in the fight against Lou Gehrig’s Disease.
“MySpace, Facebook and YouTube are the largest social networks in the world, and by having pages on these sites The Association has taken increasing the public’s awareness of the disease to a new level,” said The Association’s vice president of communications, Jeff Snyder. “The major goals of the sites also are to provide us with a stronger brand and to attract new volunteers, donors and advocates.”
Approximately 35 percent of the visitors to the Facebook site are in the 35-54 year old range. Nearly 200 members of MySpace and Facebook had joined The Association’s page two months after the sites became active in May 2008. In that same time frame On YouTube, more than 6,000 people had viewed and spread the messages about The Association’s videos.
“These powerful networking services are not just for individuals to keep in touch with friends. They are very effective networking tools for nonprofits to build awareness and connect with their community,” said The Association’s director of electronic communications, Tina Walker, who developed the pages.
This summer, in addition to family vacations and attending camp, a group of service-oriented youth and adult volunteers who serve in their local 4-H Clubs and state 4-H activities throughout the nation’s southeastern region, as well as the Virgin Islands and Puerto Rico, are raising funds to fight Lou Gehrig’s Disease for their local ALS Association chapter.
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Developing Dollars for a Cure, spearheaded by the Louisiana Chapter of the Association, represents the first time 4-H has chosen a service learning project for the Southern Region 4-H Volunteer Forum, a regional convention that will be held October 2-5 in Eatonton, Ga. At the forum, 4-H delegation representatives will present checks to ALS Association chapters on October 3. Convention attendees also will participate in the 90-minute ALS Walk for a Cure fundraising event to acknowledge that someone is diagnosed with ALS every 90 minutes.
The campaign’s goal is for each participating state to engage their 4-H members to raise a minimum of $10,000 by October 4. “Developing Dollars for a Cure” honors Southern Region 4-H Volunteer Forum photographer Ralph Meacham, who is battling ALS. Meacham, a resident of Franklin, Tenn., has worked with 4-H since the days that he was a member himself. He also has received and is receiving services from The Association’s Tennessee Chapter.
“I am very humbled by what the 4-H volunteers across the Southeast are doing for me and ALS,” Meacham said. “Once again, it proves that 4-H people think globally and act locally as they help raise funds to fight Lou Gehrig's Disease.”
“We viewed this as an extraordinary opportunity to reach out to a population of individuals that otherwise might not know about ALS in their daily activities,” said Kelly Viator, the executive director of the Louisiana Chapter. “Ralph has played an important role in the lives of 4-H members and like all good-hearted individuals, they wanted to give back. They wanted to do something special for him and what better way than to raise awareness and dollars for research in effort to help find a treatment and cure for Lou Gehrig’s Disease, all in his name. We have simply been the catalyst for their good works.”
Gary A. Leo, the president and CEO of The Association, is expected to address 650 people at the forum.
“The children and teenagers who are participating in this program represent the best of the best of their generation,” Leo said. ”Our country will be in good hands if one they grow up to be among this nation’s leaders. Their parents should be very proud of them as we are at The ALS Association.”
The Alabama, Arkansas, Florida, Georgia, Kentucky, Louisiana, Mississippi, Jim “Catfish” Hunter, South Carolina, Tennessee and Texas chapters are participating in Developing for Dollars for a Cure.
4-H, a community of more than 6.5 million young people across America, teaches children between the ages of 8 and 18 the many aspects of leadership, citizenship and life skills. The organization strives to develop the head, hearts, hands, and health of their members, and the club’s mission is to empower youth to reach their full potential through working and learning with caring adults.
Artists and art galleries in the Honolulu Arts District have held a three-day fundraiser in support of The ALS Association’s global, cutting-edge research program, and to offset some of medical bills for Hawaii artist Peggy Chun who has been battling ALS since 2002. Chun is known internationally for her paintings that capture the beauty of these tropical islands.
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Highlights of the fundraiser included an auction of cat-shaped wine bottles decorated by artists and other celebrities. Chun’s cat, Boo, served as the inspiration for the bottles.
Even though Chun is not able to speak, she continues to be active in the Honolulu arts community. Gracon described her as “charismatic” with a great penchant for humor.
“Peggy Chun inspires people as an artist, inspires those who are living with ALS as well as the entire community,” said Gracon, who presented Chun with a special award from The Association in recognition of her many efforts to raise awareness about the disease.
Over the past three years, Peggy Chun’s husband, Elroy Chun, has made the long journey from Honolulu to Washington, D.C., to represent the Hawaiian ALS community during The Association’s National ALS Advocacy Day and Public Policy Conference.
Elroy Chun has met personally with each member of the Hawaii Congressional delegation to share Peggy Chun’s ALS story, as well as some of her artwork, which reflects the sharing of her love of the islands and life. In fact, her artwork can be seen in several Congressional offices in Washington, D.C.
An advocate for a national ALS registry, as well as increased federal funding for ALS research, Elroy Chun has worked closely with senators Daniel Inouye and Daniel Akaka regarding the connection between ALS and military veterans and to secure funding for the ALS Research Program at the Department of Defense.
In addition, Elroy Chun and his family participate in The Association’s year-round advocacy efforts by recruiting new ALS advocates and supporting letter-writing campaigns.
Chun’s notecards can be purchased on The Association’s Web site e-store.
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.
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Traveling in the 21st century can be challenging for anyone and people with ALS face a score of special issues, of course, But travelers with disabilities have more resources available to them than ever before.
