President's Message: Are You Getting Sleepy?

by Kim Charlson

Like so many people who are blind or visually impaired, you may be experiencing issues with your sleeping patterns that you don't understand - nights of sleeplessness, and days when you fight to stay awake. This may appear to you to be a sleep disorder, but it's actually Non-24.
Recently, in my role as ACB president, I had the privilege to submit a letter to the Food and Drug Administration in support of a new drug application under consideration for tasimelteon.  This drug is being proposed for the treatment of Non-24. Since this condition affects approximately 70 percent of people who are totally blind, that figure represents a large portion of ACB members. Most people facing this disorder have found that treatment options are extremely limited.
The most commonly suggested treatment is melatonin, which actually can cause additional physical problems for some individuals. Traditional sleep aids have generally proven ineffective to relieve the symptoms of Non-24 Disorder. Often, the symptoms of Non-24, including severe disturbances to sleep patterns, daytime sleepiness, memory loss, and fatigue, are attributed to other conditions and misdiagnosed completely. The sleep deprivation caused by Non-24 impacts the ability of many who are employed to maintain acceptable levels of productivity on the job.  Students who are blind commonly complain of fatigue that adversely impacts their studies.
Many of our members who suffer from the consequences of Non-24 have been following the work of Vanda Pharmaceuticals as they have researched, developed and tested tasimelteon.  We in the blindness community are anxiously awaiting its availability on the market with great anticipation. We sincerely hope that our wait will not be in vain and that this drug will be approved by the FDA so that the thousands of people experiencing Non-24 can get their lives back on track.
Vanda Pharmaceuticals has been a wonderful partner to work with – they truly want to get the word out about Non-24 and ACB knows how to get the word out to people who are blind. Here's how you can both help to get the word out for Non-24, and raise some money for ACB at the same time. Even if you don't have sleep issues yourself, here's a great opportunity to help someone you know who does, and in the process, support ACB.
Vanda Pharmaceuticals has created the Non-24 Share More Campaign to raise awareness of Non-24-Hour Disorder and support the blindness community through the power of personal connections. Although Non-24 affects nearly 70 percent of people who are totally blind, few people know about the condition. That's why it's important to learn about the symptoms of Non-24 and share the information with people you know. The Non-24 Share More Campaign is designed to raise awareness, help spread the word, and support the blindness community with a growing corporate donation.
More information for you: When you sign up, you'll stay up to date with the latest information, receive helpful tools, learn about resources, and be invited to special educational events. More support for the blindness community: Sign up today and Vanda Pharmaceuticals will make a $24 donation that will benefit the American Council of the Blind and four other advocacy groups. Even better, every time you share the program with someone you know and they sign up, Vanda will make another $24 donation, which will be shared equally among five advocacy groups:

  • American Foundation for the Blind (AFB)
  • American Council of the Blind (ACB)
  • National Federation of the Blind (NFB)
  • Blinded Veterans Association (BVA)
  • VisionServe Alliance

By signing up, you generate a $24 donation. By sharing, that donation continues to grow along with awareness of Non-24 as others sign up and share with people they know. It starts with you, so sign up and share now. Sign up by calling Vanda Pharmaceuticals toll-free at 1-855-856-2424 and simply mention the Non-24 Share More Campaign. Please help to spread the word and raise some important funding for ACB. For more information about Vanda Pharmaceuticals and Non-24 Disorder, call a health educator toll-free at 1-855-856-2424, Monday through Friday from 8 a.m. to 8 p.m. Eastern. You can also visit for additional resources.