Cystic Fibrosis patient runs marathon after double lung transplant

Brighton jewellery designer runs marathon 

Amanda Chalmers gearing up for the marathon

A jewellery designer born with cystic fibrosis will run a marathon less than two years after undergoing a double lung transplant.

Amanda Chalmers, 26, could hardly walk up the stairs and was reliant on oxygen therapy 24 hours a day before her life-saving operation in September 2012.

The University of Brighton graduate will run the Brighton Marathon with six of her friends next month, raising money for the Cystic Fibrosis Trust.

Miss Chalmers, who won gold for archery in the British Transplant Games, said: “I initially signed up for the marathon in 2011 after seeing my friends complete it.

“I had just come out of hospital and for the first time needed to use oxygen therapy at home, but I was determined that by the following year, I would get myself back on track and healthy enough to run the marathon.

“That didn’t happen as I became completely reliant on oxygen 24/7 and my health deteriorated.

“By May 2012, I was on the list for a life-saving double-lung transplant and in September that year I was lucky enough to receive one.”

She said that after her surgery she knew she no longer had an excuse not to run the marathon and that completing it will be a huge achievement.

“Going from hardly being able to walk up my stairs to being able to run – and a bit of walking – in a marathon is something I’m so glad to have the chance to do,” she said.

Miss Chalmers, from Brighton, said that basic care for cystic fibrosis sufferers to maintain life and keep as healthy as possible was improving, but that many people are not lucky enough to receive a transplant.

She said: “Thanks to the Trust putting money into care and gene therapy research, a major trial of new drugs is now under way.

“This work is only possible through the generosity and support of very kind people, so when it came to picking a charity to run for it was an easy choice.”

Ed Bending, the university’s environmental communications officer, who is running the marathon with his friend, said: “Amanda’s life-saving operation and her amazing recovery are just fantastic and we are all so proud of the resilience she has shown and the can-do attitude that has led her to this point.”

Jennifer Westmoreland, head of the Cystic Fibrosis Trust’s community and fundraising events, said: “Amanda is a brilliant example of what people with cystic fibrosis can achieve when they are given the opportunity. I’m sure her story will inspire others waiting for organ transplants.”

To sponsor Amanda go to: www.virginmoneygiving.com/team/justbreathe.

By Siobhan Ryan, The Argus News

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Record-setting transplant patient still feels healthy after 25 years

The Globe & Mail

When Colleen Kohse woke in a hospital room with a new heart and lungs, she tried not to think about how short her salvaged life might be and instead focused on the fact she could breathe.

On Tuesday (Oct 29), Canada’s longest surviving heart and double-lung recipient celebrated the 25th anniversary of her surgery, which came at the forefront of a wave of transplants that gave new hope to patients who were suffering from cystic fibrosis.

Colleen Kohse (middle) at B.C. Transplant offices
Photo: Rafal Gerzsak for Globe & Mail

“I’m really happy to be here and to be able to breathe deeply, though I’m hyperventilating a bit right now,” said Ms. Kohse, 54, who seemed healthy and vibrant, if a bit nervous facing television cameras at a news conference in Vancouver.

“After all these years when I look back I still find it amazing,” she said, thanking organ donors for giving people like her a second chance at life. “It’s not just a donation; it’s a living legacy the families and their donors leave behind. As you can see, people can go on for a long and healthy life, so people are giving that to other people, which I think is tremendous.”

In 1988, Ms. Kohse was sent to England for the surgery, which wasn’t yet being performed in British Columbia.

She waited two months for someone to donate a heart and lungs. Her own heart was healthy, but at the time surgeons liked to do the two organs “as a block,” she said. Her heart went to another transplant patient, a man who went on to live for 17 years and have two children.

“It was sort of like being Frankenstein because I had so many tubes and stuff coming out of me,” she said of waking up after the surgery. “But very shortly I was able to breathe and that was a big thing. My fingers were pink, my lips were pink and it was just a tremendous feeling. To go for all my young life not being able to breathe and suddenly to be able to get up and move around and walk – it was just unbelievable.”

Asked how long she thought she was going to live at that moment, Ms. Kohse said people with cystic fibrosis, a genetic disorder that affects the lungs and other organs, live so close to death they try not to think about that.

“I tried never to look at dying. I mean, people with cystic fibrosis, it’s always in the back of our mind because we have that short lifespan and we don’t plan for the future. We don’t plan ahead a lot of time because of that,” she said.

Dr. Robert Levy, director of the Vancouver General Hospital lung transplant program, said Ms. Kohse’s anniversary is a remarkable milestone.

“It’s a huge event … it really spans almost the whole history of lung transplantation,” he said. “People like Colleen Kohse were pioneers and at the very forefront of what was happening in clinical transplantation at the time. People like Colleen were explorers, going out, not sure whether they’d return. Like an astronaut, going to the moon and hopefully coming back.”

He said about 100,000 lung transplants have been performed worldwide since the early 1980s and in B.C. there have been 255 since the first in 1989.

Dr. Greg Grant, executive director of BC Transplant, the provincial agency that handles all transplants in B.C., said operations such as the one that saved Ms. Kohse’s life couldn’t take place without the donation of healthy organs.

“When we have to ask a family for permission to consider organ donation it’s a really tough time,” he said. “We see families reach out – and that’s what I find incredibly exciting, that at the time of their worst disaster, people look forward, they look forward for something good to happen out of this event.”

Ms. Kohse celebrated the anniversary by having cake with friends, family and medical staff at BC Transplant.

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Lung transplant recipient overwhelmed by offers of support

By CINDY E. HARNETT / TIMES COLONIST 

A Saanich (British Columbia) man recovering from his second double-lung transplant is overwhelmed by the support he has received since his story was shared in the Times Colonist this month.

 Photograph by: LYLE STAFFORD, Times Colonist

James Reimer, 29, born with the genetic disorder cystic fibrosis, appealed for exercise equipment or a gym membership to help him recover after his second double-lung transplant was performed in Toronto on May 29.

Reimer was weak when he returned to Saanich on Sept. 18. He had waged a tireless fight for his life in hospital after it seemed like his body would reject his new lungs.

In answer to his appeal, Reimer, who grew up on Saltspring island, received a flood of offers, including a new Diamondback exercise bike from a local couple.

“I already feel the difference,” Reimer said. “It will help me get a lot stronger.”

Another family in Sidney has an elliptical machine waiting for him.

Reimer also received many offers of gym memberships, from such facilities as: Panorama Recreation Centre, the Pacific Institute for Sport Excellence on the Camosun College Interurban campus, Vikes Athletics and Recreation at the University of Victoria, and One to One Fitness.

A woman with lung disease also offered to pay for several yoga lessons for Reimer at the Iyengar Yoga Centre in Victoria.

Kathy Reimer, James’s mother, said the family was flooded with emails after the story appeared and has been buoyed by an outpouring of sympathy and support from across Vancouver Island and several prayer groups on Saltspring Island.

The family also has been helped along the way by community and online donations.

James Reimer’s older sister, Laura Jane, died of the same disorder in 1982, when she was five years old.

About five per cent of adults who undergo a double lung transplant will suffer a catastrophic surgical complication in the first few weeks. Another 10 to 15 per cent will die within the first year from an infection-related complication. By five years after a transplant, 60 per cent are still alive.

It’s projected that soon, 50 per cent will make it to 10 years.

Reimer had his first double-lung transplant in Toronto on May 12, 2011. A year later, he married his wife, Adena, and the next day his body began to reject those new lungs.

He is now breathing with his third set of lungs.

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Anabel Stenzel, organ transplant advocate, dies

Anabel Stenzel battled cystic fibrosis. Photo: Lea Suzuki, The Chronicle

It's with a heavy heart that I post this announcement and my thoughts and condolences go to Ana's family and friends as we remember the amazing contribution she made to organ and tissue donation awareness. I had the pleasure of working with Ana at a conference in San Francisco and was impressed with her upbeat enthusiasm and zest for life in spite of going through the ordeal of two double-lung transplants. Merv.

By Kathryn Roethel, SFgate.com

Anabel Stenzel, a Bay Area woman with cystic fibrosis who received two double lung transplants and authored a memoir with her twin sister, also a double lung transplant recipient, that inspired a documentary film, ("The Power of Two") died Sept. 22 at her Redwood City home of cancer. She was 41.

When Ms. Stenzel and her sister, Isabel Stenzel Byrnes, were born with cystic fibrosis in 1972, doctors said they probably would not reach their 10th birthdays. Over the next four decades, Ms. Stenzel graduated from Stanford, earned a master's degree from Cal and married. She worked as a genetic counselor at Lucile Packard Children's Hospital for 16 years, was a competitive swimmer and runner who won more than 20 medals in six national transplant Olympic-like games and was an international advocate of organ donation.

Ms. Stenzel was born in Los Angeles to immigrant parents who called her Ana and her sister Isa. The twins shared everything, from hospital rooms throughout their childhood, to a dorm room at Stanford, to an apartment in Japan, where they both taught English after graduating Stanford in 1994.

TEDx talk in 2013

In May 2013, in what was one of Ms. Stenzel's last public appearances, the twins gave a TEDx talk in Menlo Park about their experience with cystic fibrosis, a disease that can lead to lung failure.

"What has really gotten us this far? I think it's our love," said Stenzel Byrnes, who is generally healthy as she approaches the 10th anniversary in February of her own lung transplant. "Illness can be a very lonely experience, and we feel very privileged that we have never, ever felt alone."

Ms. Stenzel received two lifesaving lung transplants, the first in 2000 and the rare second one after her body rejected her donor lungs in 2007.

"I want to encourage donor families to know that somebody out there is living and enjoying life and thinking of them on a moment-by-moment basis," Ms. Stenzel said in a 2010 San Francisco Chronicle interview. "I think of my donor family every single day."

In 2007, Ms. Stenzel and her sister published their memoirs, "The Power of Two." The book became a documentary directed by Marc Smolowitz.

Hawaii proposal

A few months before her second lung transplant, Ms. Stenzel met Trent Wallace through a dating website. Wallace was by Ms. Stenzel's side during transplant recovery and became attracted to "how strong she was." He proposed on a trip to Hawaii, and the couple wed in June 2010. The documentary film closes with scenes from their wedding.

Shortly after the film's fall 2011 premiere, Ms. Stenzel was diagnosed with small bowel cancer - a common complication for middle-aged cystic fibrosis patients.

While she was undergoing chemotherapy and clinical trials, Ms. Stenzel was the Northern California team manager for the 2012 U.S. Transplant Games and won gold medals in swimming and running. She also was a board member of Cystic Fibrosis Research Inc., co-founded an exercise boot camp for transplant recipients in the Bay Area and volunteered for several other nonprofits.

Stenzel Byrnes said her sister's donated lungs were "perfect, right until the end." And although cancer meant she could not donate organs or most tissues, the life-long advocate donated her corneas.

New edition

In the spring of 2014, publishers plan to issue a second edition of the twins' book, this time including a 50-page afterword they wrote together before Ms. Stenzel's death. "She wrote the conclusion to her life," Stenzel Byrnes said. "And what an extraordinary life that she has lived - that we have lived."

In addition to her sister and her husband, Ms. Stenzel is survived by her parents, Hatsuko and Reiner Stenzel; and her brother, Ryuta Stenzel.

A memorial service will take place at 2 p.m. Oct. 26 in Portola Valley at Valley Presbyterian Church, 945 Portola Road. Gifts in Stenzel's memory may be made to a cystic fibrosis oncology research fund at http://makeagift.ucsf.edu. The family also welcomes donations to Cystic Fibrosis Research Inc. and California Transplant Donor Network.

Kathryn Roethel is a freelance writer. E-mail: datebookletters@sfchronicle.com

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Cystic Fibrosis film on line 6-22-13 to 6-30-13

Film about twin sisters’ double lung transplants and battle against cystic fibrosis available online

Lia Steakley, http://scopeblog.stanford.edu 

“The Power of Two,” a documentary offering an intimate look at the lives of twin sisters Anabel Stenzel and Isabel Stenzel Byrnes and their battle with cystic fibrosis, will be available on the web for viewers in the United States June 22 through June 30.

After undergoing aggressive treatments during childhood, the siblings graduated from Stanford in 1994 and completed their graduate degrees at University of California-Berkeley. They received three sets of transplant lungs between them and co-wrote amemoir chronicling their transformation from illness to wellness made possible by organ donors. Their miraculous story inspired the award-winning film. Today, the pair work at Stanford’s Lucile Packard Children’s Hospital.

The documentary is being streamed online in recognition of Cystic Fibrosis Awareness Month and to raise awareness for organ donation and transplantation.

Previously: Meet the filmmakers behind “The Power of Two” and Living- and thriving- with cystic fibrosis

Starting tonight May 21 at 8 pm,m. Pacific/Eastern, watch the KCETLink special presentation of "The Power Of Two" on TV and online across the U.S.!

Here's where you can see the film:

• LinkTV (nationwide on satellite): DIRECTV Channel 375 and DISH Network Channel 9410
• KCET (Southern/Central California): Click here for channels. 
• Online (nationwide):www.ThePowerOfTwo.tv 

The film will air through June 30 so, if you can't see it tonight, don't worry! Click here for dates/times, exclusive clips, blog posts, and resources about organ donation and cystic fibrosis. 

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Cystic fibrosis sufferer increases lung capacity by singing

By Emma Innes, Mail Online

Bianca Nicholas, 22, suffers from cystic fibrosis, which can make it hard to breathe

A cystic fibrosis sufferer has been saved from a double lung transplant by her love of singing.

Bianca Nicholas, 22, suffers from the life-threatening lung condition which means that she needs daily physiotherapy to prevent mucus build up.

She was facing the prospect of a life-saving lung transplant but incredibly, her love of belting out hits from her favourite musical, Les Miserables, has increased her lung capacity by almost 20 per cent.

As a child, Ms Nicholas’ parents were warned she may only live to nine years old - but the charity worker refused to let her condition get in the way as she dreamed a dream of musical stardom.

Now the aspiring pop star, from Beckenham, Kent, has sung for Prince William and already has a single in the top five of the iTunes chart.

She said: ‘When people discover that I have cystic fibrosis, they can't believe that I'm able to belt out the tunes from Les Mis.

‘Most sufferers tend to have quite a bad cough and get very breathless, so for some it's surprising that I can sing at all.

‘Singing actually exercises my lungs, and because I'm singing all the time, my lungs get twice as much exercise, so it really improves my health.’

She added: ‘I went for a check-up recently and the doctors told me that my lung function was up to 88 per cent - I couldn't believe it.

I'm lucky that something I love not only makes me happy, but actually improves my health too.’

Cystic fibrosis is caused by a faulty gene that controls the movement of salt and water in and out of the cells within the body, it affects 9,000 people in the UK and is thought to cause two deaths every week.

It affects the internal organs, especially the lungs, by clogging them with thick sticky mucus, making it hard to breathe.

Experts agree that singing can help those with the condition.

Ed Owens, CEO of the Cystic Fibrosis Trust, explained: ‘Many people with cystic fibrosis find unique ways to help keep their lungs clear and themselves well, and singing can form part of the breathing exercises that can help to shift the mucus, decreasing chance of infection.

‘Bianca serves as an inspiration to thousands of others with cystic fibrosis that they can follow their dreams and achieve success at doing the things they love.’

She has also dueted with Will Young, and even got the chance to perform for Prince William at a charity ball

Ms Nicholas began having tests for the condition when she was just five months old, but was given the official diagnosis after her second birthday.

She said: ‘I don't ever remember being told that I have CF, I just always knew I had it.

‘I was probably about seven years old when I realised how serious the condition is.

‘None of my school friends were going to the hospital all the time or taking loads of tablets every day. I suddenly realised I was different.

‘As I've got older I'm used to living with CF. I have to do physio on my chest every morning to clear the mucus on my lungs, and I take about 30 different drugs throughout the day.

Having improved her lung capacity, she now wants to be a professional singer

‘Every morning I take my inhaler, and a nebuliser which takes about an hour, and I have to eat a high calorie diet as the CF stops me from absorbing the goodness in my food.’

Ms Nicholas’ love of singing started when she was five.

Her mother heard her singing along to a tape and was surprised how good she was so enrolled her in an amateur dramatics group.

Since then she has been determined to make a name for herself, and regularly plays gigs up and down the country.

She has also dueted with Will Young, and even got the chance to perform for Prince William at a charity ball in 2008.

Ms Nicholas said: ‘Singing for Prince William was incredible. After I sang he gestured for me to come over and we spent half an hour chatting.

‘I was going to audition for X factor at the time, and he told me that he 'd vote for me if I went on. He was lovely.’

She said ‘I'd practice until I could sing a whole song without coughing. The more I sang, the bigger breaths I could take, and I struggled much less in everyday life.

‘It started to become clear that it was having a really positive affect on my health, and my doctors agreed.’

The next goal in Bianca's singing career is to secure a record deal.

For more information click here to visit the Cystic Fibrosis Trust’s website.

Read more at Daily Mail:

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Drummer lung recipient organizes musical fundraiser for CF

By Andrfew Korner The Queensland Times
NOT only is Raceview teenager Brandon Sanewski breathing a lot easier since a double lung transplant saved his life a year ago, but he is also free to chase his passion in life.

The 19-year-old was diagnosed with Cystic Fibrosis as a baby and increasingly struggled with associated health problems as he matured.

By the time he'd reached the age of 18, Brandon had lost 70 per cent of his lung function and was struggling with normal daily activities.

This included his favourite pastime - playing the drums - which left him feeling depressed as well as dying.

"I couldn't breathe. The doctors told me that I had the lungs of someone who had been suffering CF for 30 years," Brandon said.

Brandon's mum Tracey recalled how the mucus that had taken over her son's lungs was causing him to cough 24 hours a day.

"The mucus is that thick in the lungs that it affects the digestive system and the body is unable to digest fat," she said.

"Before his transplant, Brandon had stopped eating and required a machine to breathe."

Brandon finally joined the transplant register on Christmas Eve, 2010, but would receive two crushing false alarms and almost die before getting a lifeline in May last year.

Doctors at the Prince Charles Hospital placed Brandon on the 48-hour nationwide alert for a transplant and a matching pair of lungs was found the next day.

"I remember waking up from surgery... mum was about the most excited I had ever heard her and she said, 'You've got your new lungs!'," he said.

Brandon's health was so much better for the double lung transplant that he was able to get back into playing the drums and this year he joined his new band, "Payne Rd".

Brandon and the band will be part of the "Breathe Easy" all-ages concert - organised by his family to raise funds for the Prince Charles Hospital Cystic Fibrosis Unit and the Queensland Lung Transplant Research Centre.

Breathe Easy gig

To be held at Ipswich CWA Hall on May 26 from 5pm

Bands include Payne Rd, Awaken I Am, Dollarosa, The Break of Dawn and Ryan Dingle

Entry $5, all proceeds go to the PCH CF Unit and the Lung Transplant Research Centre

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today! Tell Your Loved Ones of Your Decision”

Australia, register at Australian Organ Donor Register

New Zealand, register at Organ Donation New Zealand

Canada - Ontario beadonor.ca other Canadian provinces

South Africa, http://www.odf.org.za/

United States, donatelife.net

United Kingdom, register at NHS Organ Donor Register

Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

TLC in U.S.to air documentary Feb 29 on Cystic Fibrosis

To read more of this story go to the following link for my post about Kristi Mills who received a last-minute lung transplant in Britain soon after being married. It's nice to see that The Learning Channel is going to show the BBC documentary Feb 29th. It's a heart-warming story.
CF Sufferer gets new lungs

Brave bride: Kirstie, with the oxygen tubes that helped her breathe, and husband Stuart Tancock on their wedding day
By Kevin Ritchie, RealScreen.com
U.S. net TLC is to broadcast a one-hour BBC special about a bride-to-be with Cystic Fibrosis who received a double lung transplant.

Breathless Bride: Dying to Live will air on the female-centric cable network on February 29. Produced by Special Edition Films for the BBC, the program chronicles the life of Kirstie Mills, a Cystic Fibrosis sufferer who has been given six months to live, as she prepares for her wedding while waiting for a lung transplant.

Knowing that the transplant call could come at any time, Mills and her fiancé plan their wedding accordingly, booking flexible venues and ordering fake flowers, for example, should they need to relocate the nuptials to a hospital room.

The doc was shot in March 2011 and aired in the UK on BBC3 last November, under the title Love on the Transplant List.

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”

Australia, register at Australian Organ Donor Register

New Zealand, register at Organ Donation New Zealand

Canada - Ontario beadonor.ca
other Canadian provinces

South Africa, http://www.odf.org.za/

United States, donatelife.net

United Kingdom, register at NHS Organ Donor Register

Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

The Power of Two Canadian Premiere Feb 13 in Calgary

I had the pleasure of meeting Ana Stenzel in San Francisco and was very impressed with her drive and accomplishments considering she has lived with Cystic Fibrosis all her life and received a double-lung transplant in 2000. I would appreciate if you would share this with your contacts and hopefully the film will be well attended for it's Canadian premiere in Calgary. PS. The doctor that performed my lung transplant in 2002, Dr. Shaf Keshavjee, is in the film! He is Surgeon-in-Chief, University Health Network and Director, Toronto Lung Transplant Program.

ANNOUNCING THE POWER OF TWO  
DOCUMENTARY FILM

February 13, 2012 at the Picture This... Film Festival

CANADIAN PREMIERE!

Two Sisters – Two Cultures – Two New Chances at Life

The Power of Two, is a transformative film inspired by the memoir written by California native identical twins, Anabel & Isabel Stenzel (Univ of Missouri Press, 2007).

The Power of Two documentary film will premiere in Canada at the 11^th Annual “Picture This…Film Festival” on Monday, February 13, 2012 at 6:00pm at the

 Albert Park Radisson Heights Community Centre, 1310 - 28 Street SE, Calgary, Alberta.

This much-anticipated film will premiere as part of the Picture This…  Film Festival, an exhibition festival featuring films about disability.

Directed by Academy Award nominated producer Marc Smolowitz, The Power Of Two is a story about love, life and survival. The film offers an intimate portrayal of the bond between half-Japanese identical twins, Anabel & Isabel Stenzel, their lifelong battle with the genetic lung disease cystic fibrosis, survival through miraculous double lung transplants, and improbable emergence as authors, athletes and global advocates for organ donation.

Featuring expert interviews, archival footage and deeply personal testimony from those whose lives have been impacted by chronic illness and organ transplantation from the U.S. and Japan, the film provides unprecedented insight into the personal and societal aspects of this modern medical miracle saving hundreds of thousands of lives worldwide.  To   learn more about the film, see:  www.ThePowerOfTwoMovie.com/the-film.

Without question, The Power Of Two provides inspiration to anyone living with serious illness and those caring for them, by enlightening viewers about the twin bond, living with illness, patient advocacy, and cultural influences on health.    

For more information about the Picture This…Film Festival’s Power of Two show, see:  http://www.ptff.org/ptff_main/2012-film-catalogue/.

The Power of Two has won BEST FEATURE LENGTH DOCUMENTARY at the Picture This… Film Festival – please celebrate this with us by joining us for our Canadian premiere on Feb. 13!

The film has already shown in 18 film festivals and has won 6 awards. Reviews have been excellent:  http://www.starpulse.com/news/Jason_Coleman/2011/08/17/review_informative_documentary_the_pow .

The Power of Two will premiere in other USA cities throughout 2012. See: www.thepoweroftwomovie.com/events/ for current listings and help us spread the word!  

                                    

Thank you for your support! We hope to see you there!

--

Ana Stenzel

www.thepoweroftwomovie.com

Support Cystic Fibrosis Research Inc. 

www.cfri.org

Nurturing Families with Education, Support and Hope!

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”

Australia, register at Australian Organ Donor Register

New Zealand, register at Organ Donation New Zealand

Canada - Ontario beadonor.ca
other Canadian provinces

South Africa, http://www.odf.org.za/

United States, donatelife.net

United Kingdom, register at NHS Organ Donor Register

Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Auction benefits youngster facing lung transplant

Volunteers call 9-year-old an ‘exceptional child’

By DALE HEBERLIG
Managing Editor The Shippensburg News-Chronicle, Pennsylvania

Lori Fleagle says there’s a team of “Grace’s Angels” coordinating the Jan. 13 Grace Fleagle Benefit Auction – a fund-raiser to help the Greene Township family get through the double lung transplant ordeal faced by 9-year-old daughter Grace.

The auction – that features some high profile items like a 3-tear-old registered quarter horse and the pick of the litter from American bulldogs due this month – will be at Ye Olde Country Auction on Shepherd Road in Newville starting at 7 p.m.

Jill Kerstetter and Ginger Mortorff are “Grace’s Angels.”

Kerstetter says she first met Grace this summer and was entranced by the personality of the little girl who’s burdened by worsening effects of cystic fibrosis, a genetic illness that attacks the lungs and pancreas.

The two met at a horse show in which Grace’s sister Arielle was competing.

“A mutual friend introduced us,” Kerstetter says. “We spent the afternoon talking and laughing and getting to know each other. I knew instantly that Grace was a wonderful exceptional child.”

That’s a typical reaction to meeting the youngster, says her mother, Lori.

Although she’s seriously ill, Grace remains irrepressible.

“She’s a wild little woman,” says Lori of her daughter. “She’s full of life and very vivacious. She doesn’t take any of this laying down. When people meet her, they can’t help getting a laugh.”

Kerstetter and Mortorff did more than marvel and laugh.

“With the conditions of Grace’s disease, she and her family endure many obstacles and challenges that a typical family does not,” Kerstetter says. “Even with Grace’s family health insurance, facing the financial responsibility of paying for transplant is quite a burden.”

The Jan. 13 auction is aimed at helping with costs like travel and lodging expenses and household and food expense during an 8-week stay in Pittsburgh when transplant surgery is done.

Lori says her daughter’s health has declined dramatically since autumn, resulting in 24/7 oxygen use and lengthy IV injection treatments that last weeks a time.

While Grace has a passion for horses, other pets and outdoor activity, she is now homebound in an effort to preserve her health until a transplant match if available. She now occupies her days with coloring, drawing and making crafts.

Kerstetter says the youngster still continues to amaze.

“She is appreciates every day and shares that joy with others in her life in so many ways,” Kerstetter says.

Unable to attend public school any longer because of her weakness and risk of infections, Grace is being homeschooled, her mother says. They wait with optimism for news of a transplant that could “come today or in six months or nine months.”

Lori Fleagle says doctors think Grace will be able survive the wait with the right care, and say a breathing machine is a last resort that remains available.

When a match is found, Grace will receive a double lung transplant that her mother says “will buy us five years or more, maybe 15 or 20” before the ravages of rejection take a toll. A second transplant is always a possibility, Lori says.

“We have to go, we can’t just sit and pity ourselves,” she says. “I’m her advocate.”

Even so, Lori Fleagle says the work of Kerstetter and Mortorff on the upcoming auction has provided a fresh shot of motivation.

“I can’t tell you how much this auction has restored by faith in God and in people,” she says. “I can’t think of words that express my thanks to Jill and Ginger. They work at this 24/7. We call them “Grace’s Angels.”

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”

Australia, register at Australian Organ Donor Register

New Zealand, register at Organ Donation New Zealand

Canada - Ontario beadonor.ca
other Canadian provinces

South Africa, http://www.odf.org.za/

United States, donatelife.net

United Kingdom, register at NHS Organ Donor Register

Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Cystic Fibrosis robs woman of ability to do normal things

New Brunswick, Canada woman now has hope for the future as she awaits a double lung transplant

by Chris Morris The Daily Gleaner

This Christmas holds special promise for 25-year-old Heather MacInnis of Harvey, who's finally able to dream about breathing freely and living normally.

The St. Thomas University student will soon be moving to Toronto with her mother, where she will await a rare, double-lung transplant and the chance for a longer, healthier life.

She has had cystic fibrosis - a genetic, chronic and fatal disease - all her life. But in the last few years, it has steadily robbed her of breath and the ability to carry out routine activities.

MacInnis said cystic fibrosis is wearing her down, and a lung transplant is her best chance at life.

"It's a chance, not a promise, that you will have lots of years and great lungs," she said of the transplant program.

"But it's the only option. It's a chance for me to get five, 10, 20 more years. Even a few more years is always worth the effort and a brief chance, if anything, to be normal for a little while or as normal as my life will ever be. There would still be medications, but there won't be three to five hours a day of treatments or struggling to get up a flight of stairs."

MacInnis is down to just 20 per cent lung capacity.

She is sitting in a room at the Dr. Everett Chalmers Hospital in Fredericton. It's as homey as it can be for the bright-eyed, petite brunette, including a quilt on the hospital bed and a small artificial Christmas tree on the window ledge.

St. Thomas University student Heather MacInnis, 25, looks out the window in her room at the Dr. Everett Chalmers Regional Hospital on Monday afternoon. MacInnis will soon leaving for Toronto to wait for a double-lung transplant. She says the operation is a chance for as normal a life as she can hope for.
She's hooked up to oxygen 24 hours a day and has feeding tubes and other lines supporting her. Her voice is raspy and she coughs often.

Her Christmas wish is big: new lungs for herself, a cystic fibrosis cure for everyone else and freedom from stress and worry for the people she loves.

"New lungs for me, no CF for everybody else and a stress-free holiday," she said with a smile.

One in every 3,600 children born in Canada has cystic fibrosis.

More and more people with cystic fibrosis are getting lung transplants, which don't cure the disease, but provide relief from symptoms such as coughing and shortness of breath. According to the most recent statistics, 44 cystic fibrosis patients received transplants in 2009 in Canada.

MacInnis' friends and family have launched a fundraising campaign to raise money for the move to Toronto. She will likely be there at least a year, waiting six to nine months for a new set of lungs and then going through several months of rehabilitation.

The costs will be substantial. She and her mother will have to live in downtown Toronto, where rent is steep, because they have to be as close as possible to medical facilities.

"Once you're on the transplant list, you have to live within two hours of the hospital because as soon as you hear the beeper, as soon as you get the call, you have less than two hours to get to the hospital," MacInnis said.

"So we have to be close to the hospital."

Some of her costs are covered by medicare, but not all of them.

MacInnis has been a STU student for about eight years, studying religious studies and sociology. She's close to finishing her degree, but she constantly loses time because of health problems.

University officials said staff members are gearing up to raise money for her expected yearlong stay in Toronto.

Derek Simon, chairman of religious studies at STU, said MacInnis is a professor's dream student.

"She has proven herself a natural leader in the classroom or seminar learning environment: always prepared, organized, insightful, articulate," he said.

MacInnis said she's still coming to terms with the prospect of having new lungs and being able to breathe normally.

"The chance to have new lungs, it's crazy," she said.

"The idea that I'll be able to get around like everybody else, you know I don't really know what that is like. I'm excited to find out. I'm sure it will be an adjustment, but a good adjustment."

Several fundraising events are being planned for MacInnis, including a musical show and silent auction in Harvey on Jan. 28.

There are two accounts set up for donations, both are in her sister's name, Barbara MacInnis: account number 20404 02375 23 at Scotia Bank at the corner of Smythe and Dundonald streets; and account number 00934-5030580 at RBC in Harvey.

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”

Australia, register at Australian Organ Donor Register

New Zealand, register at Organ Donation New Zealand

Canada - Ontario beadonor.ca
other Canadian provinces

South Africa, http://www.odf.org.za/

United States, organdonor.gov

United Kingdom, register at NHS Organ Donor Register

Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.