In my experience of going through hundreds of web sites and talking to others involved with LHON and LHON affected people I found no organization of a color or symbol for our disease. So I started thinking about what would make a great symbol for this disease and what color should we adopt. I came to the conclusion of using bright Orange as our color. I think that Orange is a good choice because as a person affected by LHON I have color abnormalities, red and green are always getting mixed up as well as, other colors just tend to blur together forming a mud effect of color. When I first went blind I actually spray painted my cell phone cover bright construction cone Orange so I would be able to find it easier lying on the table or where ever it was laying. The Orange has stayed in my life since, it’s a very bright color that does not get mixed up with others and is prominent for out vision. For the actual symbol for LHON I though that it should represent what this disease is about. So I started with an eye because it is after all the eyes that are affected by LHON I also choose mitochondria to put into the eye because this is a mitochondrial disease. So with all three ideas in mind set out to create the symbol and color and this is what I came up with. Please feel free to take this image and post it where ever you feel you can use it!
Would it be ok to use your LHON symbol on t shirts to sale for a fundraiser and to raise awareness?
We would love for you to use the symbol on T-Shirts. I will send you a file you can use. I will send it in black so the screen can be made. If you have any questions, please email my mom Christy Aston, she actually does screen printing and will be able to supply the right file types. My Mom’s email is firstname.lastname@example.org.
Great thniikng! That really breaks the mold!
This is an amazing thing you are put up. I recently just became aware that my boyfriend has LHON and he only has weeks until the process is complete. I want to do something and sometimes I do not know what to do to help. I support him everyday, but it still does not feel like enough. What are the best things I can do?
Being affected with LHON is a difficult situation for both your boyfriend and yourself. The research has come so far in the 8 years since we first learned of this disease. What is needed is more awareness and funding to get the gene therapy study from Bascom Palmer Eye Institute to the FDA for approval. There are currently about 96 people in the study at Bascom Palmer Eye Institute. Brian has posted a lot of information on this site about the study and his vitamins. He was blind for almost 7 years when he heard about Idebenone and has had quite a bit of success with the vitamins and idebenone. We are organizing a fund raiser in April to raise money for the study. You can help raise awareness is your area by asking local news or blogs to report on LHON, organize a fund raiser and most importantly just be patient with your boyfriend. There are a lot of emotions in losing your site and depending on how the change affects him, it may take some time to work through. Feel free to keep us updated. I started a page for Mom’s of LHON today to share their stories but it includes everyone who has a story to share.
I finally had the courage to watch your youtube video from the King 5 news story in Seattle. I then watched your other videos and found your website. My son who turns 17 next month, lost his sight within the last 4 weeks. First his left eye, then his right. We received a diagnosis almost 2 weeks ago. Now, we understand that this is exactly what my brother has been living with for the last 8 years, he just wasn’t diagnosed properly. We never understood why he would say he was blind, but yet point out things in his peripheral vision. So many emotions right now. It was my 14 year old nephew who found your youtube videos. Now we wonder if my sister’s two boys and my two little grandsons might also develop this. I’m trying to process all of this and continue to work and go to school. Ironically, I’m studying Occupational Therapy and have learned a lot about how to adapt and compensate when dealing with impairments. Thanks for all you are doing. You are an incredible source of encouragement.
I have just learned that my 21 yr old nephew was diagnosed with LHON. It has been incredibly sad for all of his family. How to help without making him feel we are intruding? How much longer he will continue to be able to work, before his left eye becomes as bad as the right. He worries about the type of future he can have. So many questions – the shock of this is just unreal – we don’t even know what to ask about. Thank you for the information you have provided through this site.
I am so sorry about your nephew. LHON is so hard to understand and deal with for the whole family. Just keep being supportive. There is so much research and information now than there was 10 years ago. I would suggest you research Idebenone, it could be helpful.