The Power of Two Twins Will Speak at Cystic Fibrosis Worldwide Lay Day

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CF Worldwide to host a regional CF conference in Saudi Arabia, December 2011. The Power of Two Twins will be honored speakers at the event.

Anabel Mariko Stenzel (Ana) and Isabel Yuriko Stenzel Byrnes (Isa), the twins behind the memoir, film and multimedia campaign titled “The Power of Two,” will speak to families and cystic fibrosis patients on December 7, 2011 at the Cystic Fibrosis Worldwide (CFW) Middle East Conference in Riyadh, Saudi Arabia.

Ana and Isa are identical twins who were born in Los Angeles in 1972. Their parents are German and Japanese immigrants. At only three days old, the twins were diagnosed with cystic fibrosis (CF), a genetic life-threatening disease that affects only 70,000 worldwide. Since cystic fibrosis is still a mysterious disease that cuts lives short, Ana and Isa’s doctor told their parents that the twins would be lucky to live past the age of 10.

Ana and Isa far exceeded the doctor’s expectations. They not only lived past 10, but they become thriving young women with careers and athletic interests. However, in their early-20s, the twins’ health started to take a turn. Their favorite physical activities, such as hiking and swimming, become a struggle, but the twins continued to fight.

Then, Ana and Isa received a double lung transplant in 2000 and 2004, respectively. The generous gift gave the two women new life. Sincerely grateful, the twins have put their new lungs to good use. Since the operations, the twins have ran half marathons, climbed 10,000 foot mountain peaks, swam and ran in the U.S. Transplant Games, traveled across three continents, written their memoir and inspired the creation of a film, “The Power of Two.”

The book and the film are meant to encourage other patients as well as create change. The twins advocate for better access to health care, treatment and transplantation worldwide, and their efforts emphasize bicultural, bilingual literacy and cross cultural understanding of critical health issues.

Cystic Fibrosis Worldwide is honored to have Ana and Isa as speakers during the lay day at the upcoming conference in Saudi Arabia. During the presentation, the twins, as well as other speakers, will talk about their experiences and milestones as adults with CF. The stories are meant to inspire and educate those who are suffering from CF and to show that people can find the strength and courage to overcome the obstacles associated with this chronic illness.

In the Middle East, CF patients are often viewed as outcasts. CFW and the twins seek to spread awareness and provide education as well demonstrate that CF patients are not alone and that they have the power to achieve great things in their lives.

“We feel that the issues that many Middle Eastern CF patients face may be similar to those faced by Japanese CF patients, and sharing our experiences and perspectives would be an honor,” says Ana about the upcoming conference.

CFW hosts annual CF conferences in areas where little is known about the disease. These conferences are one facet of the CFW education program, which strives to spread awareness and education as well as promote access to appropriate care. The overall goal of the program is to improve the quality of life and life expectancy of CF patients.

This year’s conference will be held in Riyadh, Saudi Arabia from December 5-7. The conference will cover basic therapeutic areas and will feature speakers from CFW’s education team. All of the team members are top medical professionals who specialize in CF.

The conference will take place at King Faisal Specialist Hospital & Research Centre. The hospital is the national referral center for organ transplantations and genetic diseases. The hospital has gained a worldwide reputation for its dedication to advancing medical science and research and has established collaborative relationships with internationally recognized institutions such as Cystic Fibrosis Worldwide.

CFW is still seeking sponsors of the upcoming conference. For information about becoming a sponsor or attending the event, please visit http://www.cfksa.org. You can also contact CFW’s Executive Director Christine Noke at cnoke(at)cfww(dot)org. CFW thanks Novartis who has been a major sponsor in this event. You can learn more about Novartis Podhaler® at http://www.novartis.com/newsroom/media-releases/en/2010/1446760.shtml

To learn more about the twins, please visit http://www.thepoweroftwomovie.com.

Cystic Fibrosis Worldwide (CFW) is a non-profit organization located in Massachusetts and Turkey. CFW is dedicated to improving quality of life and life expectancy for people living with Cystic Fibrosis (CF), a genetic life-threatening disease. Since inception in 2002, CFW has used a variety of programs to aid the CF community in Massachusetts, across the US, and throughout the world. With 67 member countries, CFW’s primary function is to spread information about the disease among scientists, medical professionals, caregivers, patients, and families and to act as a platform for the international exchange of information. In addition, CFW helps member countries, both developed and developing, by providing capacity-building tools in areas of governing, operating, and fundraising. To learn more about CFW, please visit http://www.cfww.org.

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Christine Noke
Cystic Fibrosis Worldwide
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