Foundation Fighting Blindness (FFB) is a national organization that works to find cures for retinal diseases, such as mine. This will be my first year to participate in the VisionWalk and I am very excited.
I have been very busy with Finals and haven’t been able to fundraise, unfortunately, as much as I would have liked! However, there are still 9 days left and thats more than enough time for YOU to donate.
Please consider donating, no matter how small or big, to help my team raise funds to cure blindness. I have embraced my blindness as it has presented me with many opportunities, built my character, and opened many doors. I certainly wouldn’t have my amazing Makiko without it. However, I had a lot of support and resources to make me as resilient as I am today and to perserve through each stage of vision loss I have experienced thus far. Some people, unfortunately, do not have these resources nor the support and finding a cure to help these people out is something I fully support. Therefore, would you please click the link below and read my story? I’ll copy and paste it below the link for easy access too.
Thank YOU for your consideration and helping me in the fight to find a cure for retinal diseases such as Retinitis Pigmentosa.
“Why I’m Walking & My RP Story”
Dear Friends and Family,
In the 8th grade, I started having issues in a few classrooms where I would have medical problems for reasons nobody could figure out. After starting at the pediatrician and going to all sorts of specialists, I ended up back at my pediatrician’s office. It was then that she noticed “There are a few dots at the back of your eyes that you might want to check out.” This was put into simple terms because I really would have had no clue if she explained what was actually there in scientific terms. She referred me to Dr. Edwards. At the time, he was at UT Southwestern Center. He diagnosed me with Retinitis Pigmentosa. He was a very compassionate guy and I’m sure he told my parents a lot of information but I don’t remember anything. I knew nothing different than what I was seeing so it really didn’t phase me.
Come to find out I had already lost a great amount of vision because I was around 40 degrees, whereas normal is around 180. One of the other concerns was whether my RP was genetic. They couldn’t find anybody in my family who had any of the RP genes. Dr. Edwards mentioned it, as well as a geneticist I saw when I was really younger, that it might be related to a syndrome, they just didn’t know what it was. We were very sad when Dr. Edwards moved away but i was referred to Dr. Spencer at Texas Retina Associates. He was one of the investigators on a study about a CNTF implant, an implant that gets implanted into one eye of someone with RP for 2 years. The goal was to stop the degeneration of RP. During that time period, I did not have degeneration but we do not know if it was because my eyes just didn’t degenerate during that time or if it was truly due to the implant. The Retina Foundation of the Southwest was the place that actually did the surgery and the study, with Dr. Spencer remaining as my Opthalmolgist.
I have done followup studies ever since at the Retina Foundation and also a study at the University of Houston through the Retina Foundation. Throughout college my sight has degenerated quite a bit and I use a cane now. I was so grateful to be a part of these studies and am grateful for the funding out there to fund this research at no cost to us. While I embrace my RP as part of my identity now, I still would like to find a cure for Retinitis Pigmentosa. You can help restore sight to millions living in darkness by attending VisionWalk with me, making a donation, or both! A Cure Is In Sight!
Thank you for supporting me whether it be through joining the team or a donation. I really appreciate it! 🙂