Welcome to Achroma Corp!
Achroma Corp. is a non-profit 501(c)(3) tax-exempt charity started in April 2012 by John and Bridget Vissari. John and Bridget are the proud parents of three amazing kids, one of which is affected with a rare genetic disorder called Achromatopsia.
Achroma Corp was founded out of a desire to make a powerful, positive impact not only on their son’s future, but all those affected with a form of blindness called Achromatopsia (ACHM). This condition causes the complete absence of cone photoreceptor function, the cells in our retina we rely on to read, to drive, to see faces and color, and to generally navigate through life. As a result, Achromatopsia patients are day blind, have extreme sensitivity to light, poor acuity, nystagmus (rapid uncontrolled eye movements), and color blindness.
There is no cure for Achromatopsia in humans. But research is ongoing. In animal models (dogs, mice, and sheep) genetic treatments have shown positive results in restoring cone function. These positive results in animals have led to the start of human clinical trials with gene therapy for those affected with the most common gene mutations. However, because the incidence of Achromatopsia is rare compared to other retinal diseases, funding for research continues to be limited. The lack of funding and consequently the slow pace of research led John and Bridget to start Achroma Corp. in order to help expedite a cure. Achroma Corp strives to raise funds to cover the considerable expenses of research, development, and patient studies which will ultimately aid in the successful completion of clinical trials to treat Achromatopsia. Knowledge gained with this funding will also be applied to develop treatments for children and adults affected with other forms of inherited blindness.
Since April 2012, Achroma Corp has 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.
*April 2015: provided a $30,000.00 grant to Dr. Hauswirth’s lab at the University of Florida. Specifically, this grant will help partially fulfill salary requirements (for a six month period) for the continuation of work by an MD Ph.D. level Research Professor who has worked in the lab for over 10 years. More specifically, this individual is a trained ophthalmic surgeon and experienced research who provides surgical expertise in the delivery of the lab’s gene therapy vectors to retinas of rodent models of both the A3 and B3 forms of Achromatopsia and of Blue Cone Monochromacy. He also supervises the in life testing of retinal structure in function in these models and aids in the microscopic evaluation of retinal tissue after treatment.
*November 2015: provided a $17,600.00 grant to the Medical College of Wisconsin, under the direction of Dr. Joseph Carroll. This grant was provided in order to financially support the collection of adaptive optics retinal imaging data from participants in the natural history clinical trial by continuing to follow some patients for additional imaging visits at the Medical College of Wisconsin. Our grant of $17,600.00 enables Dr. Carroll’s team to bring back 4 individuals for their 4th adaptive optics retinal imaging session in December!
*December 2015: provided a $21,000.00 grant to the University of Florida, under the direction of Dr. Shannon Boye. This grant was provided in order to purchase an Avanti JXN-26 centrifuge in replacement of a recently broken one. This centrifuge is required for the first critical steps in AAV vector production (manufacturing of AAV gene therapy vector plasmids) and is shared among two research labs at the University of Florida. With our grant, both Dr. Boye's and Dr. Hauswirth's labs will continue to manufacture AAVs related to their research on Achromatopsia. Within Dr. Boye's lab specifically, they are developing novel AAV vectors capable of delivering therapeutic genes to the retina following a non-invasive intravitreal injection. It is our hope that these newer AAVs will aid in the development of less invasive clinical treatments for a variety of inherited retinal degenerations such as Achromatopsia.
*February 2016: provided a $15,000.00 grant to Vitreo Retinal Associates, under the direction of Dr. Christine Kay, MD to help cover the costs of continuing to keep her clinical trial site's clinical coordinator on board for the CNGB3-achromatopsia natural history trial and Phase 1/2 gene therapy trial. This coordinator will also be the coordinator for the upcoming CNGA3 trial (both at the Gainesville, FL site). This request is to cover the cost of salary as a clinical coordinator, as Dr. Kay's Foundation Fighting Blindness career development award entitled, “Development and optimization of a viral gene delivery system for the treatment of CNGB3-associated Achromatopsia” has now ended, which had previously covered $17,600 of the clinical coordinator's salary per year. This part of the clinical coordinator's salary is NOT accounted for within the clinical trial budget and needs to be fulfilled in order to keep research moving forward and on track at the Gainesville clinical trial site for those participating in both B3 and (upcoming) A3 trials.
*August 2016: provided a $13,960 grant to the Boye Lab at the University of Florida. The purpose is as follows: With this funding, the Boye Lab will purchase unique mouse models that will be used to quantify the relative transduction of cone photoreceptors by novel AAV vectors following a non-invasive intravitreal injection. Cones in these mice express a green fluorescent protein (GFP). Intravitreally-injected AAVs will express a red fluorescent protein (mCherry). Dr. Boye’s group employs a fluorescent sorting technology to isolate these GFP-positive cones and quantify how much AAV-mediated mCherry they are expressing. In so doing, they can determine the optimal AAVs for delivering therapeutic genes to cone photoreceptors following intravitreal injection. Ultimately, these vectors may be used to treat patients with ACHM and other cone-mediated inherited retinal diseases
*August 2016: purchased a stand-alone Zeiss HD video recorder ($5,995.00) that will allow the video-taping of gene therapy surgeries at the Gainesville ACHM clinical trial site. As part of the surgery protocol for current achromatopsia gene therapy treatment trials, surgeons are required to video-record the surgery in order to document the creation of the subretinal bleb and thus be able to document the region of retina that was treated. The surgi-center where Dr. Kay performs this surgery (Gainesville clinical trial site) does not own video capability and equipment is not covered by the clinical trial sponsor (AGTC). Our purchase enables surgeries as part of the treatment trials to continue in compliance with the trial protocol.
*November 2016: provided a grant in the amount of $17,600.00 for partial salary of clinical trial coordinator for the achromatopsia (ACHM) gene therapy trial at Gainesville site (Vitreo Retinal Associates) for 2017 budget. This will allow for consistency in personnel with testing components (ERG testing, photography, microperimetry, visual fields, etc.) and ensure high-quality data collection for trial participants and researchers.
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)