Individuals who are at least 18 years old and have Stargardt’s Disease are invited to participate in a study by Jennifer Bryan in the Department of Psychology at the University of Houston. The study is designed to gain insight into the life experience of those with Stargardt’s, one of the most common forms of juvenile macular degeneration.

This project involves completing three questionnaire packets and three brief writing sessions.　The packets will take approximately 60 minutes each to complete. After completing the survey at home, participants will receive their topic for writing. There will be two follow-up surveys three and six weeks after the final writing session. Upon full completion of the study, participants will be entered in a lottery for a prize basket.

If you meet the qualifications and would like to participate, please click the following link: https://www.surveymonkey.com/s/PHFTSLL.

This project has been reviewed by the University of Houston Committee for the Protection of Human Subjects, which can be reached at 713-743-9204.

As many of you know, Vanda has been conducting research on a sleep problem related to total blindness called Non-24-Hour Sleep-Wake Disorder. They have received many questions asking for information about how the study is progressing and if it is working. They are pleased to be able to share the following information from the screening stage of the study that you may find interesting.

• The drug Tasimelteon was shown for the first time to reset the body clock and to align it to a constant 24-hour day in patients suffering from Non-24-hour
• Over 1,000 totally blind NLP (no light perception) individuals have taken the Vanda sleep survey
• Over 75% report a sleep problem
• 70% of those screened in the Vanda’s main clinical study have a confirmed diagnosis of Non-24-Hour
• Over half of patients in the study have a sleepless night once per month
• Vanda’s main study is close to the target 100 patients but still needs additional participants
• Vanda has donated over $30,000 to blind related non-profits

For more information on Non-24-Hour Sleep-Wake Disorder, go to http://24sleepwake.com/. To take the survey, call 888-389-7033, visit www.non24registry.com or email info@non24registry.com.

“Healthier Living with Diabetes” is a workshop open to anyone with diabetes or pre-diabetes and the people who care for them.

Participants will learn appropriate exercises for strength, flexibility and endurance; healthy eating; relaxation and stress-reduction techniques; medication management; and about working more effectively with healthcare providers.

Participants will make weekly action plans, share experiences and
help each other solve problems they encounter

WHEN: Begins Wednesday, January 11 from 1:30 to 4:00 p.m. and continues for the following five Wednesdays: Jan. 18 and 25, and Feb. 2, 9 and 16
WHERE: Community Room at Curry Senior Center, 315 Turk St., San Francisco
TO PRE-REGISTER (required) please call: Christian Intemann, 415-346-6380 ext. 111 or Jane Lev, 415-255-3614

Vanda Pharmaceuticals has been conducting research on a chronic sleep disorder that affects about 50 percent of totally blind people. To learn more about non-24-hour sleep-wake disorder and find out if you are eligible to participate in the study, visit 24sleepwake.com.

The Matilda Ziegler Magazine for the Blind recently published an article about non-24-hour sleep-wake disorder and about improving sleep and alertness in the blind. Read it here.

Dr. Steven Lockley, assistant professor with Harvard Medical School and an associated neuroscientist with Brigham and Women’s Hospital in Boston,  has been studying the effects of light on our body rhythms and the effects of visual impairments on body rhythms for about 17 years. Listen or read the transcript of his presentation at the Hadley School for the Blind by clicking on the following link and scrolling till you find the links to the Sleep, Light and Your Body Clock (Thursday, July 14, 2011) presentation:
http://www.hadley.edu/PastSeminars.asp

Dr. Lockley is involved in a medication study sponsored by Vanda Pharmaceuticals and is looking for participants to take part in an FDA trial. You will be compensated for your time if you are accepted into the trial. If you are interested, please contact the referral center at 1-888-389-7033 or go to www.non24registry.com to take a short survey.

Are you falling asleep during the day? Do you ever feel like your sleep patterns are different than the rest of the world? If so, you may have a sleep problem related to your blindness. Would you like to help find a solution to this issue?

Vanda Pharmaceuticals is engaged in a medication study to address this disorder. Vanda is looking for participants to take part in an FDA trial. You will be compensated for your time if you are accepted into the trial. If you are interested, please contact the referral center at 1-888-389-7033 or go to www.non24registry.com to take a short survey.