Heros and Pioneers

"Be not afraid of greatness; some are born great, some achieve greatness, and others have greatness thrust upon them."

                   - William Shakespeare,  Twelfth Night


In this section, we honor those individuals who have in their own way advanced the understanding of achromatopsia. These include writers, athletes, artists or musicians who have shown that talent, desire and persistence cannot be deterred by achromatopsia. Others are advocates, scientists, and writers who have helped the world better understand achromatopsia. What adjectives can we use to describe them?  Brilliant, innovative, courageous, gifted and persistent might all apply. However, their individual achievements stand as the best testaments to them. The stories in this section give us a brief glimpse into their lives.


John Kay  He began as a young boy with achromatopsia in war ravished East Prussia, born two months after his father had died in the war. He and his mother would eventually escape from East Germany and years later immigrate to Canada and eventually to the U.S.  John slowly and persistently made his dream of a music career come true and by his twenties had became a rock ‘n’ roll superstar as founder and lead singer of Steppenwolf. The unique powerful sound of John’s voice and Steppenwolf has forever been immortalized in rock history with songs like Born to be Wild, Magic Carpet Ride, Rock Me, The Pusher and Monster....more


Staci Mannella  - Staci is another amazing person with achromatopsia. She 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.




Frances Futterman - Few individuals have had more impact on bringing an understanding of achromatopsia to the world, than the late Frances Futterman. She brought achromats from around the world together through her Achromatopsia Network. She is a role model for others who faced challenges in their life.  She was able to not just survive, but to change the world...more

Knut Nordby - Knut Nordby was called the most famous rod monochromat in the world, but he was also a scientist. Having this condition gave him great understanding of both sides of achromatopsia, the scientific and the personal experience. He worked throughout his life to bring better understanding of vision in achromatopsia...more


Oliver Sacks
- Called the poet laureate of Medicine by the New York Times, Oliver Sacks brought an understanding of achromatopsia to the world through his book, Island of the Colorblind. This beautiful book that chronicles his 1994 trip with Knut Nordby, researcher and achromat and Bob Wasserman, ophthalmologist, to the Pacific Atol of Pingelap in the Micronesia...more


Jay Lonewolf

Jay Lonewolf is an extraordinary painter. His deep passion to express the powerful visions of his dreams could not be dampened by his visual problems from achromatopsia or by those around him who thought he could not become an artist. His powerful abstract art has achieved levels few artists reach...more




Ellen Tomaszewski - Writer, Ellen Tomaszewski, has been an important advocate for achromatopsia. Ellen’s fourth daughter, Katy, was born with achromatopsia. Her book, My Blindy Girl, presents the story of a raising Katy. Ellen also organized and acted as master of ceremonies for the first ever Achromatopsia convention in Dallas, Texas on July 3, 2008 in conjunction with the National Federation of the Blind convention...more


Rachael Scdoris - Rachael Scdoris is a professional sled dog racer and inspirational endurance athlete from Bend, Oregon. Rachael was born with congenital achromatopsia. Rachel is a role model for others with achromatopsia. She has never let the achromatopsia get in the way of her goals. Her story is featured in her autobiography, No End in Sight...more


Meghan Sims - Meghan is a talented young Canadian artist. Her artwork uniquely captures many aspects of the visual world of achromatopsia.  Meghan found a catharsis in her art, especially in its ability to openly present the differences in how her eyes see the world. Her art stands as a powerful representation of her vision of light, glare and contrast...more


Karl Schwonik - Alberta born, award-winning drummer, Karl Schwonik, has performed from the rural fields of Alberta, to the stages of Carnegie Hall and the Kennedy Center.  His achromatopsia helped shape his selection of drums as his musical outlet but could not limit his talent...more

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.