The Achromatopsia Clinic
The Low Vision Centers of Indiana

 

A Video Introduction to Achromatopsia



Achromatopsia.info is designed to be a major resource for all individuals with congenital achromatopsia. This site is limited to the two primary forms of congenital achromatopsia: rod monochromatism and blue cone monochromatism. We hope this site will help patients and their family members better understand achromatopsia and the new methods of helping those with this condition. It includes both the clinical low vision information based on the decades of our doctors' work with patients with achromatopsia from throughout the United States and around the world, as well as the practical steps to improve day–to-day life.

We hope you find this site helpful. We are eager to receive feedback on this site. You may email us with your thoughts or requests to Dr. Laura Windsor at drlaura@eyeassociates.com.

 

What's New?


 

We would love to bring attention to a great website and organization. Achromacorp is a non-profit setup by John & Bridget Vissari, parents of a 6 year old boy with achromatopsia. Their mission is to raise money and awareness in order to fund research that will eventually lead to new treatment and someday a cure. Please visit their site and make a donation if you feel strongly about funding new research to help find a cure or even better treatments for achromatopisa. Click here to visit their site.

 


 

 

Ken Kase - An Achromat's Tale

We just added the story of Ken Kase, A St Louis based musician, producer and artist. He shares his story of living with and overcoming Achromatopsia. 

“My eyes may be flawed, but I strive to see beyond my own experience. I try to understand the motivations of others rather than yearn to be understood.” - Ken Kase

To read his entire story and listen to some of his amazing music please click here.

 


 

New Movie: Achromatopsia - New Options in Contact Lenses

Our doctors have just added a new movie, Achromatopsia: New Options in Contact Lenses. It discussed the new design and fitting approaches our doctors at the Achromatopsia Clinic have developed. Click above to view the movie on our Contact Lens page, or view the movie directly on youtube.

 

View John Kay’s Amazing Story

We have now added the amazing story of John Kay lead singer and founder of Steppenwolf to our Pioneers and Heros section. John has been the voice of classic rock ‘n’ roll songs like Born to be Wild and Magic Carpet Ride. Having achromatopsia alone might limit some individuals but John was faced with obstacle after obstacle in his early life. He never  let these obstacles detour him from his dream of music stardom. His story should be read by all with achromatopsia and serve as an example of persistence for everyone to appreciate.  Click here to view.

 

 

Wickedly Fast Young Skier: The Staci Mannella Story

We have just added the story of another amazing person with achromatopsia. Staci Mannella is an Adaptive Alpine skier from New Jersey pursuing her goal of participating in the 2014 Paralympics in Sochi, Russia.

After you read her story, I hope all those with achromatopsia consider supporting her quest with a donation through her website at www.StaciMannella.com . The costs to the family of any young athlete involved in ski racing are extensive. For a visually impaired ski racer those costs are double as all visually impaired athletes are required to race with a guide. Both racers need to be on FIS legal equipment. Staci’s family carries the additional burden of supporting Staci’s guide, including paying all her expenses for attending camps and races with Staci. Click here to view.

 

Project Chroma: Learn about Project Chroma, a program through the John and Marcia Carver Genetics Laboratory to genetically identify as many as possible of the estimated 30,000 cases of achromatopsia in the United States.  Click here to learn about the project.

 

New Regular Column:  Green on a Gray World

We are excited to welcome Steff Green’s column Green on a Gray World, Musing on a Life with Achromatopsia.  Steff is based in New Zealand and is a great writer, whose own experience with achromatopsia brings great insight to her writings. She mixes information and humor in a wonderful way. She will be a regular feature on our website.  Be sure to read her first column on the perils of cooking & Christmas shopping with achromatopsia...click here to read.



Acknowledgements

We wish to thank Barry Futterman for his permission to use some materials created by his parents, Frances and Mark Futterman for the Achromatopsia Network at achromat.org, and for providing the historic photo of Frances Futterman and Oliver Sacks meeting in 1994 on his return from the "Island of the Colorblind." We also wish to thank Ellen Tomaszewski, Meirav and Ma'ayan Malter, and Rachel Scdoris for their help and submissions, and our sincere appreciation goes to artists Jay Lonewolf, Meghan Sims, and performer and composer Karl Schwonik. A special thank you goes to the many patients who have participated in this project with their photos and stories. We also thank John Kay for his generosity in working with us to tell his amazing story.