Welcome to Achroma Corp!
Achroma Corp. is a non-profit 501(c)(3) tax-exempt charity started in April 2012 by us…John and Bridget Vissari. We are the proud parents of three amazing kids. For the past 8 years, we have been navigating the ever changing waters of the low vision world with our middle son who is visually impaired due to Achromatopsia.
“Achroma-what?” you ask. Achromatopsia. (ey-kroh-muh-top-see-uh)
Raymond was diagnosed with Achromatopsia, a rare genetic visual disorder which affects functioning of the cones in the retina when he was 6 months old. Cones are essential in helping the eyes to adjust to bright lights, see clearly from far away, and differentiate colors. One of the most significant symptoms of those affected includes extreme light sensitivity (resulting in complete day blindness). Raymond needs to wear dark red tinted glasses (or red central contacts) to be able to see when outside or in bright lights indoors. The best way to understand day blindness is the example of leaving a dark movie theater and walking into the bright sunlight. The sudden “white out” glare you may experience for only a few seconds is what Raymond can experience all day in bright lighting without his special glasses. For most of us, cone cells quickly help our eyes adjust to the bright light. Raymond’s cones however, do not have the ability to take over in bright lighting, leaving him trapped in that “white out” state and literally blinded by the light. In addition to day blindness, affected individuals experience very poor acuity (ability to see things clearly at a distance) resulting in legal blindness. Raymond needs to be close to things to see them clearly or at all. Achromatopsia also results in either a total lack of color vision or at best very limited color vision. In Raymond’s case, his world is without any color. He sees things only in shades of grey.
Everyday tasks that people with normal eyesight do each and every day effortlessly, and without even giving it a second thought, are very difficult and sometimes not even possible for him.
Things like being able to locate a friend from across the room, easily and quickly finding something you’ve dropped, or easily finding something at all are extremely challenging. Catching a baseball, watching TV from across the room, enjoying the beautiful colors of a sunset or the fall leaves, determining if two socks are the same color, going outside without first having to put on your dark red glasses, or running down a wooded path and having the ability to see and actually avoid a hole ahead of you are currently not possible. Raymond will never be able to legally drive in our state, never be able to pick up his girlfriend for a date, drive his buddies to football practice, drive to the grocery store, or to work. Like many people with low vision, our son has learned some ways to cope with his disability. But our hope is for him not to have to.
Research is being done, and SOMEDAY there WILL be a cure.
There is no cure for Achromatopsia in humans. Limited research continues on developing genetic treatments. In animal models (dogs, mice, and sheep) genetic treatments have shown positive results in restoring cone function. The recent positive results in animals may soon lead to human clinical trials with gene therapy. However, because the incidence of Achromatopsia is rare compared to other retinal diseases, funding for research is limited. The lack of funding and consequently the slow pace of research led us to start Achroma Corp. in order to help expedite a cure. Our mission is to raise significant amounts of money to help fund the considerable expenses of research, development, and clinical trials leading to treatment so that SOMEDAY will become REALITY.
Since April 2012, we have provided a number of grants to support our mission of funding a cure including…
*November 2012: provided a $12,000.00 grant to Dr. Hauswirth’s lab at the University of Florida in order to support an additional research personnel specifically dedicated to their Achromatopsia gene therapy research project
*May 2013: provided a $10,000.00 grant to Dr. Hauswirth’s lab at the University of Florida in order to help purchase a Beckman Type TY-TI70 ultracentrifuge rotor to increase vector preparation and purification capacity for current gene therapy research
*December 2013: provided an initial $16,125.00 grant to the Chicago Lighthouse in order to provide the funding necessary to include an additional 5 patients in clinical screening and participation as part of the R24 NIH research grant and clinical trial. A shortfall in support for this critical part of the program arose when the 2013 US Government sequester led to a 15% overall cut in the approved level of the grant funding by the NIH. Although all elements of the R24 grant felt this funding reduction, most critically affected were the clinics that have had to limit the number of patients they can screen through NIH support, namely the Chicago Lighthouse. In order to address this need, Achroma Corp. has agreed to provide funds totaling $45,125.00 over the next 2 years in order to support the participation of an additional 5 patients in the CNGB3 Natural History Clinical Trial at the Chicago Lighthouse site (thereby doubling their initial participant numbers from the initial 5 to 10). Information regarding this clinical trial can be found on our Path to a Cure page.
*June 2014: provided a $500.00 stipend to Columbia University in order to support Dr. Stephen Tsang’s stem cell research with Achromatopsia and other retinal diseases.
*July 2014: provided remaining $29,000.00 grant to the Chicago Lighthouse to fulfill commitment for 5 CNGB3 Natural History Clinical trial participants (thereby fulfilling our $45,125.00 commitment).
*September 2014: provided (by request) over $29,800.00 in clinical trial equipment to support current clinical trial efforts! Several replacement retinal imaging machines and equipment (including Haag-Streit Octopus 900 Pro machine, Burian Allen bipolar adult and pediatric electrodes (for EEG completion), and a laptop EVA tester) were acquired last week that will be utilized during the current CNGB3 Natural History Clinical Trial.
*January 2015: provided (by request) a $25,000.00
grant to Dr. Hauswirth’s lab at the University of Florida.
Specifically, this grant will allow for the continuation of work
(for a four month period) by an Assistant Scientist (a faculty level
research position) who has worked in the lab for about 10 years and
is a key element in ongoing Achromatopsia projects. She provides
technical expertise in the design and construction of novel AAV
vectors tested in Achromatopsia animal models, and aids in both
microscopic evaluation of retinal tissue after gene therapy
treatment and cone function analysis of treated animals.
*January 2015: provided (by request) a $25,000.00 grant to Dr. Hauswirth’s lab at the University of Florida. Specifically, this grant will allow for the continuation of work (for a four month period) by an Assistant Scientist (a faculty level research position) who has worked in the lab for about 10 years and is a key element in ongoing Achromatopsia projects. She provides technical expertise in the design and construction of novel AAV vectors tested in Achromatopsia animal models, and aids in both microscopic evaluation of retinal tissue after gene therapy treatment and cone function analysis of treated animals.
Your help in continuing to raise money is critical. There are many ways you can become involved with helping us raise funds, whether you want to be involved a little or a lot! Check out our Events page for ways you can become involved.
Achroma Corp. is a registered Non Profit Corporation in the state of Pennsylvania. Registration details can be found at: https://www.corporations.state.pa.us/corp/soskb/CSearch.asp
Achroma Corp. is a tax-exempt charity under IRS Code, Section 501(c)(3)