in our hoUSe.....!

in our hoUSe.....!

Friday, July 22, 2011

Did you know that the new Mrs. America has RP?

April Lufriu - Mrs. America 2011
This could be the boost we need to get the word out!  Mrs. America 2011, April Lufriu from Tampa Bay, FL, has early signs of retinitis pigmentosa (RP), as do two of her children.  This article, Relishing the Crown, in the Spring 2011 edition of In Focus from the Foundation Fighting Blindness, is an interview with April about her win and about her advocacy work for the visually impaired.  She is the president of the Foundation Fighting Blindness' Tampa Bay Chapter.

Retinitis pigmentosa is just one half of the Usher Synrome equation.  But it is the vision part - or the loss of vision, actually - that seems to be the far greater disability to manage for Usher patients.  My daughters always claim to have a handle on their hearing loss and cope very well in their personal and professional lives.  But the vision changes and the challenges that imposes is something else again.

Any awareness, funding, and research on RP will help with the fight against Usher Syndrome, so I am thrilled with this news of April's winning platform.  Congratulations to April and her family!



Anonymous said...

The new MRS AMERICA is a personal friend . We are both from Tampa, FL. I am so grateful to have a sweet and wonderful person inside and out that is creating awareness for Foundation Fighting Blindness. I have Usher Syndrome type 2 and TWO FABULOUS Cochlear Implants!!!!

Louise Giordano said...

Thank you, Anonymous, for your comment! I've been gratified to hear directly from April too via Facebook. My daughters also have USher type 2. Best wishes to you! We might wish to talk with you about your cochlear implants at some future time.

Louise Giordano