MAKE STROKE AND APHASIA A GOVERNMENT PRIORITY!
Stroke is a frequent cause of disability, often followed by Aphasia. Aphasia is a devastating language disorder that affects more than 1 million Americans, more than cerebral palsy, muscular dystrophy, or multiple sclerosis. Within the next two months, the federal government will be establishing the priorities for this year's areas of rehabilitation research and demonstration projects, especially those for the research and training centres. There is not much federal support for aphasia and aphasia does not have as much visibility as other disorders, for many reasons.
One reason, we believe, is that Aphasia’s research does not attract a real interest of the major pharmaceutical companies, another reason, according National Aphasia Association, is that elected officials may not be aware that many of their constituents have aphasia. Therefore, they need to hear from people who have aphasia or those who care for them to raise their awareness. By making stroke and aphasia a federal priority and providing funding for stroke research and training centres, elected officials can have a direct positive impact on the quality of life of people suffering from stroke and aphasia.
Your voice matters. Although it is difficult for people with aphasia to communicate, the more people your Senator or Congressman hears from, the more attention they may pay to the problems caused by aphasia. Your representatives can be contacted by email, regular mail, by telephone, or most effectively in person at their local offices.
For more information visit www.aphasia.org or contact National Aphasia Association at 29 John St., Suite 1103, New York, NY 10038. Or call 1-800-922-4622.
Your letters are critical to obtaining this priority in Stroke and Aphasia. National Aphasia Association provided a sample letter here reproduced:
February _______, 2003
[Name and address of your elected official/NIDRR official]
I urge you to make stroke and aphasia a priority for federal Research and Training grants for the coming year. Let me tell you what happened to me.
I had a stroke that resulted in APHASIA. Aphasia is a communication problem that results from a stroke or brain injury that affects a person’s ability to talk, understand, read and write. I was able to receive speech therapy for my aphasia for many weeks and worked very hard to make my communication better. However, once rehabilitation ended, I needed help to deal with making my life productive and enjoyable. I am now in an Aphasia Support Group that is connected to the National Aphasia Association. The support group and mentoring have been vital in my adjustment to my disability and my making the most of my abilities to have a good quality life.
There are over one million people with APHASIA in this country that need support and mentoring beyond traditional rehabilitation. Most of my group members have had insurance cut off therapy after only a few weeks. Most of us find we continue to make progress months and years after we finish therapy. If stroke and aphasia are not made a priority for the coming year’s Research and Training grants, people with aphasia will not receive the support they need to be able to continue to improve their communication and have a better quality of life.
Because I was able to participate in an aphasia support group, I am better at expressing my needs and sharing my feelings with those who are close to me. I have been able to continue my recovery after therapy ended. This would not have been possible without receiving the long-term support of the National Aphasia Association; its support groups and mentoring network.
Please make stroke and aphasia a priority for funding for Research and Training grants for the coming year.
Thank you for your support.