Lisa Pleasants, Executive Director, MOMS for Sight, Inc.
Lisa Pleasants has a son, Brendon Cavainolo, with X-Linked Juvenile Retinoschisis. She also has two brothers and one cousin with the same disease. Because this disease is x-linked, it can pass from mother to son, from mother to daughter or from father to daughter. However, the females only act as carriers and the males display the disease. Brendon is legally blind. He needs magnifiers, CCTV's, and large print books in school. Despite his disease, he is a black belt in karate, an avid runner, and an aerospace engineering major at the University of Central Florida. Thanks to his drive and the encouragement of his mom and all of his family members and friends, we know he will achieve whatever he wants in life. Brendon has participated in an historical clinical trial for gene therapy. If you'd like to see a bit more about his journey, please visit the following videos: https://www.youtube.com/watch?v=589729brpnM and https://www.youtube.com/watch?v=oCdO0Ic4d-M and www.youtube.com/watch?v=sTvV5U47Y2s and https://youtu.be/f7LBnOLU-AM Lisa served as the President for the Jacksonville Chapter of Foundation Fighting Blindness for two years and received the FFB Volunteer of the Year Award (Florida Region) in 2014. It is her goal to end blinding retinal degenerative diseases so that her family and millions of other families no longer have to learn to live with blindness.
Suzi Ford, Director, MOMS for Sight, Inc.
St. Augustine, FL
Suzi Ford is a carrier of an X-linked retinal degenerative disease called choroideremia. Her mother and aunt are also carriers. Her son Josh, brother, and cousin are currently facing daily challenges living with the blinding effects of this life altering disease. Suzi’s grandfather completely lost his sight. In the early 70’s, Suzi’s family was given no hope. Years of living in fear drew Suzi to the Foundation Fighting Blindness (FFB). Suzi gained much knowledge and support from FFB and was blessed to have met other moms who could understand exactly the pain she was enduring. Suzi was voted in as chapter president in 2008. In 2012, she was given the honor of receiving the Foundation Fighting Blindness Florida Region Volunteer of the Year Award for her leadership and growth of the local chapter. It was awarded by Mrs. World, April Lufriu. A bond grew within the FFB moms as well as a desire to do more than what they could do alone as chapter leadership for FFB. Suzi is thrilled to have accepted a Director’s position with MOMS for Sight, Inc. so she can increase her ability to provide outreach, education, and support to the community. Suzi does not want anyone to live with the daily fear of waking up to darkness. Those who have reached out to her and the chapter no longer live in fear; they live with hope because of FFB and MOMS for Sight, Inc. As a mother, it is a significant comfort to Suzi that FFB has begun clinical human trials for gene therapy for choroideremia and other retinal degenerative diseases. She lives with much hope that her son and other family members will live their lives with as much of their remaining sight as possible. In September 2013, Suzi's employer promoted and relocated her to South Florida. Suzi relocated her mother, Bobbi, as well. After years of dedication growing the Jacksonville Chapter, Suzi handed off the baton to her FFB/MOMS "sister", Lisa Pleasants. She knew the Chapter was in excellent hands. UPDATE: SUZI IS BACK “HOME” IN NORTH FLORIDA, RESIDING IN ST AUGUSTINE. We are so happy to have her back!!
Angie Johnson, Director, MOMS for Sight, Inc.
Angie has two daughters affected with the rare and blinding retinal degenerative disease called Leber Congenital Amaurosis (LCA). Neither parents are affected with the disease as it occurs when each parent, called carriers, have one gene for the disease paired with one normal gene. Each of the carrier’s children has a 25 percent chance (or 1 chance in 4) of inheriting the two LCA genes, one from each parent, needed to cause the disorder. Carriers are unaffected because they have only one copy of the gene. BOTH of Angie’s girls happened to be the one chance in four. They have limited visually acuity for which they utilize low- vision tools and receive specialized vision training at school and home. Raising two visually impaired children can be overwhelming and joyful all at the same time and Angie and her husband, Jeremiah, continually rely on their support group for strength and comfort. It consists of an amazing group of family, friends, doctors, teachers, and the Foundation Fighting Blindness. While treatment for LCA has not yet been released on the market, current clinical trials have shown immense success and promise for a cure. The Foundation Fighting Blindness (FFB) exists to fund vital research necessary for finding a safe and effective treatment for LCA, as well as, many other retinal diseases. FFB has given Angie hope for a time when her daughters will continue to lead a fulfilled life without the daily struggle of visual impairment.
Judy Ludlam, Director, MOMS for Sight, Inc.
Over forty years ago I learned that my sons had X-linked juvenile retinoschisis. That I had passed on this disease to them. That they would never be able to see normally. That one of them would never drive an automobile. That they would pass on this disease to their daughters who would then become carriers. That I had passed on this disease to my daughter who became a carrier and passed this disease on to her son. That it would never get better. And that there was no cure. But today we know that this is not true. Because of the research being conducted with funding by the Foundation Fighting Blindness, there is hope of a cure being found…a cure for our disease and for other retinal degenerative diseases. This is why I am so proud to be a Director of Moms for Sight, an organization dedicated to helping the Foundation Fighting Blindness. Because, like all moms the world over, I want the best for my children and grandchildren.
April Lufriu, Mrs. America & Mrs. World
The Jacksonville Chapter was lucky enough to meet another Mom on a Mission for Sight through Foundation Fighting Blindness. She's attended two VISIONS conferences as Mrs. America and she actually took the time out of her busy schedule to attend one of our Jacksonville events to raise money for the Jacksonville VisionWalk. She knew her sister had Retinitis Pigmentosa so she and her sister established the Tampa, FL Chapter of Foundation Fighting Blindness and the VisionWalks. Then, she and her two children were both diagnosed with Retinitis Pigmentosa themselves. Now they weren't just fighting for her sister, they were fighting for their whole family, present and future. To quote April, "The news of our children's diagnosis brought my husband & I to our knees." April was a sister on a mission, but she is now a mom on a mission and she had the courage to raise awareness like no one else ever has for the Foundation Fighting Blindness. She joined the pageant world again, as a married mom. After representing as Mrs. Ybor City, she won Mrs. Florida 2011. Then, she won Mrs. America 2011 and became the official spokeswoman for Foundation Fighting Blindness. Even better news came months later when we all heard that she won Mrs. World 2012. Her "platform" for the pageant was always to raise awareness about vision robbing diseases like Retinitis Pigmentosa. Thanks to April, millions of people who never even heard of these diseases before are aware and hopefully opening up their hearts and wallets to raise funds for cures. We, in Jacksonville, feel honored to have such a wonderful, beautiful and extremely gracious woman as one of our MOMS for Sight!
Jennifer Crowley, another mom on a mission for sight!
Jen has two sons affected with x-linked juvenile retinoschisis. She knows that the faith her family has will get them through all of the tough times and that all of her children will live fulfilled lives. There are still hard times. She wants her sons to play sports, to drive cars, and to be happy. Her oldest son, Noah, has worse vision than her youngest son, Colby which will make a driver's license questionable. Colby experienced a hemorrhage, common to this disease, when he was in first grade. This event made it clear that the family would need to do what they can to protect their sons' vision. Like all moms, Jen fights for her children and wants a cure for them. Her daughter Taylor might also be a carrier. So, a cure needs to come soon. There is no need for this disease to affect the next generation in Jen's family!