Aphasia Hope Offers Online Forum People with aphasia can now tap into a new resource provided by the Aphasia Hope Foundation. The Foundation—which supports aphasia survivors, advocacy, and research—has expanded its Web site ( http://www.aphasiahope.org/) to include an online forum of aphasia experts. According to the National Institute of Health, over 1 million people in ... News in Brief
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News in Brief  |   August 01, 2002
Aphasia Hope Offers Online Forum
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Language Disorders / Aphasia / News in Brief
News in Brief   |   August 01, 2002
Aphasia Hope Offers Online Forum
The ASHA Leader, August 2002, Vol. 7, 3. doi:10.1044/leader.NIB3.07142002.3
The ASHA Leader, August 2002, Vol. 7, 3. doi:10.1044/leader.NIB3.07142002.3
People with aphasia can now tap into a new resource provided by the Aphasia Hope Foundation. The Foundation—which supports aphasia survivors, advocacy, and research—has expanded its Web site ( http://www.aphasiahope.org/) to include an online forum of aphasia experts.
According to the National Institute of Health, over 1 million people in the United States suffer from the disorder. The foundation, established in 1997, was created to help aphasia victims become aphasia survivors. The mission of Aphasia Hope is two-fold: to promote research into the prevention and cure of aphasia, and to ensure all survivors of aphasia and their caregivers are aware of and have access to the best treatments available.
The foundation was born from the personal experiences of aphasia survivor John Stradinger and his caregivers. Foremost among this group of caregivers was Stradinger’s wife Judi who now serves as the foundation’s executive director. Removing misconceptions is a driving focus for Mrs. Stradinger. “Aphasia survivors are still the same people on the inside,” she says. “They don’t want you to feel sorry for them.”
In addition to its Web site, the foundation has made advocacy a top priority. In 2001, foundation leaders traveled to Capitol Hill to meet with congressional leaders, as well as members from different branches of the National Institutes of Health. Their advocacy contributed to aphasia being included in the 2002 Senate Appropriations Bill report, which lead to a National Workshop on Aphasia this past May. The foundation strongly supports ASHA’s effort to repeal the $1,500 Medicare caps, which restrict the availability of speech-language pathology services to people with aphasia.
The foundation is also organizing a coalition, which ASHA supports, of groups that support more funding for aphasia research.
In April, Aphasia Hope began its Professional Panel Series on its Web site. The forum allows the public to ask questions of the country’s leading aphasia experts and to view the questions and answers of others. The broad range of topics discussed with the professionals has ranged from the basic questions of someone newly diagnosed with aphasia to the more detailed questions of long-time caregivers. The Web site is a useful place for people with aphasia and caregivers to get information and also to share their tips and stories that will help to inspire others.
Ironically, the ultimate goal of Aphasia Hope is to no longer exist. “If we truly accomplish our mission, then research will provide ways to both cure those living with aphasia, as well as develop measures to prevent others from acquiring this disorder,” says Chris Fontan, programs director for Aphasia Hope. “Until then, we will never quit striving to provide a better life for survivors.”
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August 2002
Volume 7, Issue 14