Fibrodysplasia Ossificans Progressiva & other cancer/diseases ART TRIB

I HAVE A FRIEND. HER NAME IS BETINA CHARIS RAMIREZ. SHE IS LIVING AND SURVIVING F.O.P. (FIBRODYSPLASIA OSSIFICAN PROGRESSIVA) EVERYDAY.

She is ONE of the approximately 700 people afflicted with this rarely known condition. Although she is wheelchair bound, Charis is friendly, independent and faith-driven. She and her family once resided here in Qatar. Currently based in California-U.S.A, and pursuing Bachelors of Science in Business at CALIFORNIA STATE UNIVERSITY, FRESNO, and is nurtured by her loving family, friends, school mates, and fellow F.O.P-ers. As of now, there is no cure only prevention is key to stop FOP, even surgery makes matters worse. She is the only 100% Filipina known to have been diagnosed with FOP.

Just like every woman, Charis would love to wear high heels and stand up with confidence. Witnessing her as my school mate, she is a very intelligent woman and shining at her best. She is always an honor awardee, and a top student even before [her] FOP became worse. During elementary and high school, she attended and graduated at M.P.S. : Middle East Primary School now renamed M.I.S : Middle East International School; along with her brother, Christian "Chip" Ramirez who also studied at the same school before transferring to Philippine School Doha : P.S.D. (So basically, we went to the same schools).

She sort of compares her condition as the "Mannequin", or a "Barbie doll" effect because of her stiff joints -- she barely could not move. Somewhat a shy-type person, but very fond of music, arts and fashion especially masquerades or mardi gras. "Masks reflect my personality and myself,' she cites.

"Devastating" was the word she once used to describe FOP. Yet she thinks, if we continue to "believe", there is surely a cure.

Fibrodysplasia Ossificans Progressiva (FOP) is a rare genetic ailment which consists of bones forming into muscles, tendons, ligaments and other connective tissues. When these extra bones grow on joints, it prevents movement and form a secondary skeleton imprisoning the body in bone.



Instead of spending too much money on your latest gadgets, your designer labels, or focusing too much about Hollywood buzz, -or- if you cannot do anything with your money, please do find a place in your heart and time for the initiative to help with any of the following ways:

-donate-

GIVE by donating at http://www.ifopa.org/ and for my friend, Charis in her Facebook account. We need to raise FOP awareness by creating organizations, arrange fund raising events, shows etc. to help Charis and every FOPer.

[currently her donation site" http://www.firstgiving.com/fundraiser/charis-ramirez/international-fop-association-inc"; is under construction. will be updating for further changes.]

-help find cure-

Doctors, nurses, scientists, surgeon, genetics, medicine...and any form "curaga".... we can simply help find cure by providing information about health and F.O.P.

-research-

Take time on researching and gather information about F.O.P.

-spread the love-

Repost, reblog, read, write, and talk about F.O.P.

Celebrate "international F.O.P. day" each APRIL 23.

-speak out-

I am pretty sure that there are more than 700 cases that are related and are affected with F.O.P and this is nothing to be ashamed of. The world is open for free-thinking and freedom of speech. We do not need to condemn, and hide F.O.P. It is a terrible disease that the people need to know. It can happen to anyone. So if there's a survivor, or surviving, who is affected of F.O.P among your family/relatives or someone you know, please do speak out. This is nothing to be ashamed of for the more you testify, the more you help F.O.P victims!


-MAKE F.O.P. (or any cancer/disease) themed art/literature/music-
I just found out there's quite a little ART ABOUT F.O.P. (or all types of DISEASES). LET'S HELP THE VICTIMS BY MAKING ART of all fields!

IT'S ABOUT TIME.

IF YOU CAN HELP ME SPREAD THE F.O.P AWARENESS AND CHARIS FOR HER F.O.P CURE, PLEASE SHARE THIS WEBSITE. > http://www.ifopa.org/

ADD HER. DONATE TO HER HERE IN FACEBOOK OR THRU http://www.ifopa.org/

-or-

simply show some love BY ATTENDING PHYSICALLY AND SPIRITUALLY at > http://www.facebook.com/event.php?eid=191162330896691.

BEST OF LUCK TO CHARIS AND HER FELLOW F.O.P-ERS.

Please like the group to support my friend, Charis & the FOP awareness.
FB: https://www.facebook.com/pages/Charis-FOP-Awareness/258600477494253

466 Pageviews | Created Feb 10th