Lauren Meiss For someone who says she chose biomedical engineering as a major in her freshman year at Arizona State University “because it just sounded good,” Lauren Meiss has fared rather well academically.

Actually, she has excelled – both in and out of the classroom.

Now a senior planning to graduate in the spring of 2012, Meiss has her sights set on further schooling to earn a dual degree that would train her to become both a physician and a medical scientist.

One of her latest achievements will aid her pursuit of that goal.

Meiss was recently selected as winner of the Thriving Undergraduate Student Scholarship awarded through the Cystic Fibrosis CareForward program established by Abbott, the global health care company.

The company awards the program’s scholarships annually to support students living with cystic fibrosis, an inherited chronic disease that affects the lungs and digestive system.

From among many applicants across the United States, Abbott earlier this year selected 40 finalists – each of whom received a $2,500 scholarship award. From among the group, one graduate student and one undergraduate student were chosen for the Thriving Student awards, which this year provides an additional $16,500 in scholarship funds.

More than academic records are considered. Students are judged on their extracurricular activities, creative talents, community involvement and “ability to serve as positive role models.”  

Meiss’s resumé shows why she scored highly on all counts.

As a student in ASU’s Barrett, The Honors College, she currently carries a 4.23 grade point average for her upper-division courses.

Her performance in the biomedical engineering program in the School of Biological and Health Systems Engineering, one of ASU’s Ira A. Fulton Schools of Engineering, has earned her summer positions as a student-assistant at a prominent Stanford University research center and in the cystic fibrosis research lab of Children’s Hospital Oakland Research Institute.

She’s involved in a premedical scholars program at Mayo Clinic and performs volunteer work at the Mayo hospital. She assists with patient support services at the Phoenix Children’s Hospital Cystic Fibrosis Center.

Meiss did an internship as a guide and educator at Arizona Science Center and won an ASU Fulton Undergraduate Research Initiative competition for robotics design and programming.

She’s a co-author of research project summaries published in medical journals and collaborated on a presentation given at a major cystic fibrosis research conference.

Meiss has volunteered as an outreach coordinator for the Biomedical Engineering Society and for a program that encourages young students to pursue careers in engineering and science.

“Lauren was the most outstanding student in my class last spring” says ASU biomedical engineering associate professor Michael Caplan. He taught her in Bioengineering Transport Phenomena – a junior-level course about how molecules move around the body. “Her dedication to the day-to-day work combined with a natural academic talent make Lauren an exemplary student,” Caplan says.

When not immersed in studies, research and community activities, Meiss has displayed an artistic side.

She’s an experienced musician – a pianist – composer, singer and dancer. In high school she performed in show choir, which requires both singing and dancing skills.

She was in an all-state show choir for three years and ranked among the top 10 high school alto show choir students in Arizona. She was musical director for a school theater production – in which she also acted – and choral director for a church choir.

The video she submitted for the “creative presentation” required of applicants for the CareForward scholarship featured Meiss singing one of the songs she has written, performed and recorded to support fundraising for the Cystic Fibrosis Foundation.

(The video was produced by her brother, Trevor Meiss, a freshman studying computer systems engineering in the Ira A. Fulton Schools of Engineering.)

Her achievements are all the more impressive considering the efforts she must make to maintain her health.

Each day Meiss must adhere to a regimen of medication, treatment and exercise to prevent the potentially debilitating consequences of her condition. She’s also undergone several surgeries to remedy some of the troublesome physical effects of cystic fibrosis.

Her fortitude in coping with the disease is “a testament to her character,” says Thomas Martin, a lecturer in the Barrett honors college for whom Meiss is currently a teaching assistant.

In a letter of reference for Meiss, Martin noted the habit of some students to make excuses for the lack of quality in their school work “when they encounter hindrances and obstacles that are slightly out of the ordinary.”

In contrast, Martin wrote, during a semester in which Meiss was a student in his class, “Lauren never once asked for special treatment” due to her condition, “despite the fact that she faces daily challenges that are beyond what most of her peers (or instructors) have to face.”

Meiss is using her experience with the disease as career motivation. She has recently applied for a prestigious Fulbright Scholarship. The program enables college graduates to study and conduct research in other countries as a way to foster international relations between potential future leaders in science, engineering, education and other fields.

She hopes to study in Sweden and learn from researchers there who are making advances in treatments to prolong the lives of people with cystic fibrosis.

See the essay and video Meiss submitted as part of her application for the CareForward Scholarship, and the Abbott company’s news release about this year’s scholarship winners..

http://asunews.asu.edu/20111027_laurenmeiss

Photographer inspired to take action

 Halloweenphotofundraiser.jpg  

After discovering a friend, who suffers from cystic fibrosis, was ailing, Erin Wallis was inspired to help in any way she could.

Wallis, a close family friend of Campbell River raised Kim Wood (Black), decided to combine her love of photography and passion for the cystic fibrosis cause, to host a halloween themed fundraiser after discovering Wood was back in the hospital with complications due to cystic fibrosis.

 “Her Facebook status was gloomier than usual, and it really tore my heart out to not be able to do anything for her,” said Wallis.

To help fight cystic fibrosis, Wallis, a professional photographer, will set up a studio at Campbell River Common to photograph children in their Halloween costume on Sunday.

Wallis says she can understand what parents of sick children go through after experiencing a scare just after her own daughter Maisie was born in April, 2010.

While in the emergency department with Maisie, who was having difficulty breathing, she imagined what it would be like for a parent to hear the diagnosis of “cystic fibrosis” instead of “here is some medication to make her better.” Throughout her life Wallis has watched the Black family and others work hard to raise funds to help find a cure for cystic fibrosis so people like Wood could have a longer and better life. Wallis herself has helped with many of these events and some of her photos are used by Cystic Fibrosis Canada in brochures and advertising.

Wallis recalls Wood as a child using a nebulizer, taking lots of pills, having her daily physiotherapy to help clear her lungs and her frequent trips to the hospital.

Wallis was so inspired by Wood’s fighting spirit that she decided to embark on her own fundraiser for the cystic fibrosis cause.

“Sometimes the fight seems overwhelming, like it might be too much – you’ll see Kim’s statuses go to ‘Not particularly excited about my upcoming hospital food hospital bed, PICC line and having my life revolve around an IV medication schedule,’” Wallis said. “And then, she turns a corner and comes out fighting – and they go to  ‘Just wanted to say thank you all so very much for all your well wishes, thoughts, positive healing energy and everything else you’ve all sent me.  I feel so loved and cared for and am happy to finally be out of the hospital! ‘  And you just want to stand up and cheer and hug someone. Kim is an inspiration and I love her dearly.”

To help support Wallis’ fundraiser, bring your child in full costume to the mall from 11 a.m.-2 p.m. on Oct.30.

“It is a win win situation,” Wallis said. “I get to spend a few hours photographing your hilarious small people all dressed up, and you get photos of your little ones dressed up, and Cystic Fibrosis Canada will benefit.

For more information see Erin’s blog, www.erinwallis.com/blog

http://www.bclocalnews.com/lifestyles/132740203.html

Student’s double lung transplant

Kirsty Geddes COURAGEOUS Kirsty Geddes this week relived the terrifying moment when she thought she was going to die.

The Coatbridge College student suffered a collapsed lung in her boyfriend’s Glasgow home.

And while waiting in his bedroom for the ambulance to arrive she told Dougie Harvey (26): ‘I’m sorry. I’m going to die.

“It was one of the scariest moments of my life. I couldn’t breathe. I really thought this was it.”

Both Kirsty’s parents Sandy (55) and Annette (56), are carriers of the faulty gene which meant there was a one in four chance of their children having Cystic Fibrosis.

And in this case Kirsty was born with it.

The popular student has two big sisters Tracey (36) and Julie (33), who do not have the disease. Julie has a daughter, Caitlin (12) and Tracy has a daughter Tamzin (11).

Kirsty said: “I was really well when I was younger and brought up by my parents as a normal girl but I knew I would have to get physio and take medication.”

However, when Kirsty was 13-years-old she began to lose a lot of weight and developed a chest infection and was diagnosed with diabetes.

She was regularly admitted to Yorkhill Hospital with breathing difficulties and six years later developed scarring on her lungs.

She said: “I couldn’t walk the length of myself and doctors said that if I went to university I wouldn’t be here in a year because of the damage which had been done to my lungs.”

However, Kirsty was determined to have a career and enrolled as a student at Coatbridge College in 2007 on the full-time HNC Hairdressing course.

In February 2008 Kirsty suffered a collapsed lung in Dougie’s home.

Fortunately, brave Kirsty pulled through but had a further two collapses.

She said: “Doctors told me that if I didn’t get on the transplant list there was nothing they could do if I had another collapse.”

During her time at the college Kirsty required round-the-clock oxygen support, physiotherapy and numerous medications but amazingly she didn’t allow her failing health to stand in her way and in October 2009 she graduated with an A in HNC hairdressing.

Her passion to succeed progressed as she joined the HND course but she had fallen so ill that her only hope of survival was a double lung transplant.

And in November last year she received the fantastic news that she was to receive her transplant.

Kirsty travelled to Newcastle for an assessment and was put on the transplant list.

While waiting for the green light Kirsty went to RockNess with Dougie.

She said: “I was so ill Dougie had to give me a piggy back everywhere because I couldn’t walk and I needed oxygen and was on a ventilator at night.

“I ended up in Gartnavel Hospital and the nurses took a double take when they saw me as I was bright blue.

“I was treated as a matter of urgency and the day after my birthday I got the call to say I was getting a transplant. It was the best birthday present ever.”

She added: “I remember walking about The Fort in Glasgow with an oxygen machine with everyone pointing and staring at me.”

Kirsty and Dougie and her family travelled to Freeman Hospital in Newcastle where she underwent the nine-and-a-half hour transplant operation.

She said: “I woke up after seven hours and felt amazing and was doing so well that they [the nurses] moved me out of intensive care. I was in hospital for two weeks before moving to a hospital flat for a week and then home for Christmas 2009.

“It was fantastic celebrating with new lungs. It was just amazing.”

In June 2010 just six months after receiving her transplant Kirsty completed the first year of her HND course achieving grade A for her graded unit.

She has successfully completed the HND make-up artistry course and is currently employed as a make-up consultant with MAC Cosmetics.

She said: “I can walk, dance, climb and go to Zumba classes.

“The staff at college were amazing and I have fantastic friends. Dougie and I plan to travel and see the world.

“The studying kept me going and gave me something to focus on when I was feeling bad.

“The rest of my life I will be living for my donor.”

She added: “I am absolutely thrilled to be receiving the award.”

Donna Brogan, Kirsty’s hairdressing lecturer, said: “Kirsty is an inspiration to all of us and we would like to say how proud we are that she is receiving this much deserved award.”

http://www.acadvertiser.co.uk/lanarkshire-news/local-news/monklands-news/2011/10/26/student-s-double-lung-transplant-65864-29659211/

Brandon Bout  is a junior at McCallie School and doesn't let cystic fibrosis affect his ability to play the saxophone for the school's band.Brandon Bout, 17, plays piano, guitar and tenor saxophone. He is on the junior varsity tennis team at McCallie School.

His friends, he said, call him The Music Snob, because of a preference for what he called “obscure bands,” including Yes and King Crimson.

Every morning, Brandon wakes up at 5:15 to have breathing treatments before school because of his cystic fibrosis. He wears a vest, similar in look to life vests worn on boats, attached to a machine that massages his chest and improves his airflow.

“He’s very diligent,” Cheri Bout said of her son.

Cystic fibrosis is a chronic condition that affects the lungs and digestive system. The body produces an unusually thick, sticky mucus that can clog the lungs and obstruct the pancreas, making the breaking down and absorption of food difficult.

According to the Cystic Fibrosis Foundation, about 30,000 adults in the United States are afflicted with CF.

Last week, Cambridge, Mass.-based pharmaceutical company Vertex submitted a new drug application to the Food and Drug Administration for Kalydeco, a “medicine in development that targets the defective protein that causes cystic fibrosis,” according to a news release.

Cystic fibrosis has been a part of the Bout family’s routine since Brandon was 2 months old.

“He has truly a normal life, what we consider normal,” his mother said. “He eats, drinks, does all the things he wants to do.”

Ms. Bout has been working on 3 Blind Wines, a wine-tasting fundraiser for the Cystic Fibrosis Foundation, which takes place tonight at The Mill.

Peg Johnson, a recruiter at SunTrust Banks, said she has a special spot in her heart for anyone fighting cystic fibrosis because she has a deep fear of being short of breath.

“I can’t even fathom what these poor kids have to go through every day,” she said, “I feel so incredibly blessed.”

In addition to being a fundraiser, 3 Blind Wines is an opportunity to disseminate knowledge about cystic fibrosis.

“It’s our one big opportunity to educate the community on what cystic fibrosis is, to let them know what people who have CF go through on a daily basis,” Johnson said.

Brandon, a junior at McCallie, is a typical teenager. He is looking at colleges. He wants to be a chemical engineer, his mother said.

“Some engineering,” Brandon corrected. “I know I’m doing engineering, I just don’t know what right now. Chemical engineering sounds nice.”

In some respects, Brandon is lucky. He’s never had pneumonia. He has had to spend minimal time in the hospital having antibiotics delivered intravenously. Two summers ago, he had to have several surgeries to treat an intestinal blockage.

But he’s better off than others. Some CF patients are so ill that only a lung transplant is a viable option. For the Bout family, it’s not even a consideration.

“We’re not thinking about it,” Bout said, “because he’s healthy.”

A believer in healthy living, Bout has made sure her son has grown up with good nutrition, vitamins and supplements. He has had acupuncture to relieve his symptoms.

Patients with CF often have trouble gaining weight. At 6-foot-3, Brandon is tall for his age, and thin, but so is his whole family, his mother said.

“You wonder,” she mused, “genetics versus diagnosis.” She puts heavy cream into high-protein shakes to help him put on weight. The doctors want him to gain. They also want him to be active. It’s a double-edged sword, she said.

Besides the physical impediments CF can cause Brandon, and the demands on the family’s time — he’s had to miss some school for treatments — the condition can also create a financial burden on patients and their loved ones. Routine treatments and medication can add up to thousands of dollars a month, Bout said.

“You really have to wonder,” she said, “are they looking at health-care costs?”

http://timesfreepress.com/news/2011/oct/27/cystic-fibrosis-foundation-brandon-bout/

Learning about Nic’s world

test4Nic Stogner 1

Students at Coronado K-8 School are coming together for a common cause, to help their classmate Nic Stogner.At age 7, Nic was diagnosed with cystic fibrosis.

Now, at age 14, his classmates and teachers are learning what he goes through everyday, and jumping in to help the cause.

Their education about Nic’s world started at the beginning of the school year after his eighth-grade teacher, Aimee Finkelstein, read through her list of students.

“We always get a list at the beginning of the year that lists students with allergies, students who have asthma, and then I see Nic’s name with CF next to it,” she said. “I was just floored. At first, I wanted to talk to him, but wasn’t sure how.”

Finkelstein said she started a dialogue with Nic and got an idea of what he goes through. She asked if he would be willing to explain to his classmates why he doesn’t always participate in physical activities, why he takes 40 pills a day, and why he has to go through two, 30-minute breathing treatments per day.

Nic said Finkelstein is the first teacher to take an active interest in educating other students about his disorder since he started attending the school in kindergarten. She turned his situation into a learning experience for her class.

First, she had Nic tell his story to his classmates. Then Finkelstein had her students go into the computer lab to research what CF is, and how it impacts a person.

CF is a genetic disorder that affects the lungs and digestive system, and makes kids who have it more vulnerable to repeated lung infections.

More than 30,000 kids and young adults are diagnosed with the incurable disease every year.

The research project transitioned into a contest where the students wrote persuasive essays on why people should donate to the cause that could someday help Nic.

After learning all the details, Finkelstein said it was amazing how quickly and enthusiastically the students got involved. They even started a bracelet fundraiser for cystic fibrosis.

Now, the students have obtained a national sponsor, with Burger King in Oro Valley agreeing to donate 20 percent of all proceeds from sales on Nov. 4 between

5 and 8 p.m.

The students also are planning a car wash, dance and other events to keep raising money for the cause.

Besides raising money for the cause, Finkelstein said they are hoping to raise enough for the class to get T-shirts to honor Nic.

In the end, Finkelstein said her goal is to let Nic know he matters.

“Kids need to know each person is a seed that can grow and make a difference for someone like Nic,” she said. “I want him to go to high school not being invisible. I want him to be honored for who he is.”

If you go

What: School fundraiser to help find a cure for Cystic Fibrosis. 20 percent of all proceeds will be donated.

When: Nov. 4, 5–8 p.m.

Where: Burger King, 10615 N. Oracle Road, in Oro Valley

http://explorernews.com/news/article_ff553870-ff57-11e0-936d-001cc4c03286.html

The Power Of Two, a documentary about twins who battle cystic fibrosis and have emerged as global advocates for organ donation, screens this week as part of the United Nations Association Film Festival. Recipients of double lung transplants, half-Japanese sisters Anabel Stenzel and Isabel Stenzel Byrnes spread awareness about the importance of organ donation throughout the United States and in Japan, where donation remains rare. We spoke with the Stenzels recently about their illness and their role as international educators.

 

How did you develop into global advocates for organ donation?
It was something we did not actively pursue, but rather it occurred by chance. When we were sick, we were consumed by our own health needs. However, after our transplants, we both had enormous energy and needed a productive, meaningful outlet for service.

Once we were transplanted, and our memoir was published in 2007, this became a vehicle from which to launch an educational opportunity about cystic fibrosis awareness and the benefits of organ donation.

Organ donation remains highly controversial and therefore extremely limited in Japan. As half-Japanese, we were welcomed into an opportunity to put a spotlight on the non-Caucasians around the world who suffer tremendously from this disease.

Why is organ donation rare in Japan? How have you worked to raise awareness there?
Being barely routine for 30 years, organ transplantation (hence donation) is a relatively new science for all the world. It takes time for some cultures to reconcile this new medicine with their cultural beliefs about death, altruism, and spirituality.

In addition, there are cultural taboos against touching a deceased body, sending a deceased body to the afterlife with organs removed, and cultural differences in which giving unconditionally to strangers is not as customary as in our country.

Japan passed a new law in favor of organ donation in July 2009; our book tour occurred in October 2009, so we also could show our support for this new law. Because we are half Japanese, we believe the listeners for the most part were receptive to our message. Based on feedback we received, we believe we opened up some hearts and minds.


You have achieved a lot in spite of difficulties associated with your disease. What has been your greatest success?
(Ana) Our greatest success has been to still be alive! Lung transplant is one of the riskiest solid organ transplants, and the risk of infection, rejection, and cancer is always there.

(Isa) My greatest success is publishing my book and witnessing all the opportunities to unfold because of the book. When you are faced with a life-limiting illness, there is an instinct to somehow prove that you have existed. I needed to write my story to make sense of all the losses and hardships, as well as the victories and joys. Another thing I’m very proud of is growing older to become wiser and more mature inside. That’s a gift, but something I’ve also worked at.

How has working together helped you face the challenge of your illness?
(Ana) Being an identical twin is a special experience for any twin, but when you experience congenital, lifelong, life-threatening illness with your twin, I can’t imagine any other two human beings who could possibly be closer. We act as each other’s parent, sibling, best friend, therapist, and as an “old married couple” all at the same time. We know for a fact that we would not be alive had we not been born twins.

(Isa) Our story represents a very basic human fact: Survival is more successful with teamwork. By helping each other physically (with treatments) and mentally with our diseases, we are able to survive and thrive.

What do you hope to accomplish with this film?
(Ana) In this day and age of health care reform and debate, I hope that people can see the good of American health care, the patient’s role and responsibility in self-care, and the opportunity that an illness community can offer in education, enhancing coping, and improving quality of life.

Most of all, I hope people will consider signing up to be an organ donor. Though I never would wish upon anyone to actually face tragedy and be an organ donor, we know that tragedies happen, and after the fact, donating organs allows a person to leave a legacy. To sign up to be an organ donor: www.donatelifecalifornia.org

What do you see as the biggest misconception about organ donation?
(Ana) I think that most people in general have a fear of thinking or talking about death, so talking about organ donation can be difficult. There are also misconceptions that if you are signed up to be an organ donor, then your doctor is less likely to save you in the event of an accident or illness, or that organ donation benefits only the wealthy or famous.

On a personal note, I feel that the greatest misconception about lung transplantation is that once a person has new lungs, he or she is cured and will live happily ever after. We still have cystic fibrosis in our gut and sinuses, we often develop side effects from the medications, and we are at risk of infections due to a compromised immune systems. It just reinforces our need to cherish each day, enjoy the good days and embrace the gift even more.

(Isa) I believe people who are hesitant about organ donation focus on the death part. In other words, they think organ donation is about death. I hope this film shows that organ donation is about life. Organ donation is one way to make a difference, do something good and help others after death. That’s pretty awesome.

The Power of Two screens Wednesday at 8:30 p.m. at Stanford University as part of the United Nations Association Film Festival. Admission is $10.

For more events in San Francisco this week and beyond, check out our calendar section. Follow us on Twitter at @ExhibitionistSF and like us on Facebook.

What We Can All Learn From Mike Thibault

Initially, I was hesitant to ask Connecticut Sun coach Mike Thibault about his tragic family history with Cystic Fibrosis.

Not because I didn’t care, but simply out of respect and sensitivity.

“I’m not sure how to frame the question without seeming like an ignorant jerk,” I kept thinking, cynically.

After all, how do you ask someone who has had five siblings (yes, five) pass away from the vicious disease to talk about it? To relive it? Discussing any death of a family member is obviously difficult but having five siblings pass away? I can’t imagine…

Knowing the type of person Thibault is, I asked my question as sincere as I could.

“Mike,” I began. “I understand that Cystic Fibrosis has been a huge part of your life for many, many years. Can you elaborate on how it has affected you and your family?”

Thibault’s subsequent reply is something we, as human beings, can all learn from.

***

Cystic Fibrosis (CF) is a disease passed down through generations that causes thick mucus to build up in the lungs, digestive tract, and other areas of the body. One of the most frequently occurring chronic lung diseases in children and young adults, CF is a serious, life-threatening disorder.

Because the mucus builds up in the breathing passages of the lungs, it can cause serious breathing and digestive problems as well as negatively affecting the reproductive system. Coughing, fatigue, shortness of breath, recurring episodes of pneumonia, and lack of appetite are some of the most commonly occurring symptoms. Treatments include antibiotics, inhaled medicines, enzyme therapy, vaccines, oxygen therapy, and even complete lung transplants. Today, most children are diagnosed early on (before the age of two) and can live fairly healthy lives. The average life span for those afflicted by CF is nearly 37 years which is a dramatic increase over the past 30 years. Still, it’s a scary reality for anyone afflicted.

For Thibault, he can’t really remember a time when CF wasn’t a part of his everyday life.

“I’m the oldest of nine,” Thibault said of his family. “I’ve had four sisters and a brother pass from it. I have two sisters and a brother who are surviving and none of them have CF. My sister was the second born, the first to get CF, and she died at the age of five. I was about seven at the time. It caught almost every other kid from there on.”

Being the oldest, Thibault developed a genuine, natural sense of responsibility and obligation to help his parents take care of his siblings. Back in the 50’s and 60’s when Thibault was growing up, there had been very little research done on CF; there was no concept in the medical field that CF could be a generational disease. The mental, physical, and financial toll it took on Thibault and his parents was both strenuous and demanding.

“Life expectancy is much greater today,” Thibault said. “As time went on, the treatments have improved. Again, I had a sister die at five but then I had another sister live until 21. There are a lot of medications people can take today that will help, especially if you’re diagnosed early on. The development and funding for research is the biggest thing and progress is definitely being made.”

Thibault remembers helping his parents administer breathing and chest percussion treatments to his siblings on a daily basis to help them cough up as much mucus as possible for better air intake. This was everyday life for Thibault and his parents. Other than school and work, there really wasn’t much time for anything else.

“It’s like anything else in life,” says a humble Thibault when asked how it affected him directly. “When you’re going through it, especially when you’re younger, you don’t really think about. It’s just what you do. It’s just what is. Now, being older, I can’t imagine how my parents went through that every single day. But growing up, it’s just what you did – you had a sick brother or sister that you helped out. We were a big family so you got through it together.”

The only time Thibault remembers CF affecting him directly was when he played in a baseball or basketball game and his parents weren’t able to attend because they were taking care of his brothers and sisters. But when Thibault talks about it, there’s no remaining hurt or hard feelings; he realizes his parents couldn’t be everywhere at once and, due to his sympathy and compassion, he’d rather them be with his siblings.

“I always felt bad for them,” Thibault says as his voice becomes somber. “Both my parents and my brothers and sisters. I understood that my parents obviously wanted to be at the games but just couldn’t. That was their life, besides work. As I got older and ready to start my own family, having seen what my parents went through, I had a much greater appreciation for life when it is ‘normal.’”

Twenty-three years have passed since someone in Thibault’s family has been diagnosed with CF. But the reality and magnitude of the possibility is still there. Thibault is a carrier of CF but in order to pass it down to your children you need both parents to have a defective CF gene (his wife, Nanci, is not a carrier). Thibault says that CF is no longer something he and his family worries about on a daily basis, but they certainly are aware of it.

“I’m grateful that my kids are healthy,” says Thibault matter of factly. “My son, Eric, is a carrier but we don’t think my daughter, Carly, is. Today, my attachment to it is more with local events that I can be involved with. I don’t have the day-to-day contact like I had growing up. My wife is as involved as anybody. She’s helped chair up the teams that do walks to raise money, volunteer, help with mailings, things like that. She has been really great about it. When we got married, there were still a couple of kids in my family that still had it and she developed a connection with them.”

***

Back to the very first question I asked Thibault: Can you elaborate on how it has affected you and your family?

His honest, straightforward reply caught me off guard…in a good way.

“It helped me realize that I never have anything to complain about. Nothing. Whatever I have going on in my life can’t be all that bad.”

Thibault’s glass-half-full take on life, especially considering his childhood combined with the daunting world we live in today, is nothing short of remarkable.

http://www.slamonline.com/online/other-ballers/womens/2011/10/what-we-can-all-learn-from-mike-thibault/

Off in the distance, a smallish figure jogs toward the football stadium from the main buildings at Wilson High School.

Cody Gross, the Warriors football coach, knows exactly who it is almost without looking. He isn’t surprised that William Chandler is running toward the field house.

“He’s always running,” Gross said in a tone that indicates he’d be shocked if the freshman wasn’t jogging.

There’s often a special bond between players and coaches, but certain individuals seem to stick out a little bit more than some. For Gross, Chandler is one of those players.

Maybe it’s because, according to Gross, Chandler will volunteer to play any position at any time despite his diminutive 5-foot-4, 118-pound frame.

Maybe it’s because Chandler is always going full tilt regardless of what’s being asked of him.

It most certainly is not because Chandler battles cystic fibrosis, diabetes and asthma. He takes breathing treatments, administers himself insulin shots and uses an inhaler.

“No special treatment,” Gross said. “None. You wouldn’t know there’s anything wrong or going on with him.”

Chandler is one of a number of freshmen Gross has relied on this season as he builds Wilson’s football program. Chandler hasn’t cracked the starting lineup, but he plays on kickoff return and kickoff coverage teams. In practice, he’ll volunteer to take on any role Gross or his staff request.

“I love football,” Chandler said, smiling so that his braces are prominently displayed.

Sitting in the football weight room before practice, the freshman’s eyes get wide when talking about the game.

“I love being on the kickoff team,” he said. “You just go down and hit whoever jumps out in front of you. Practices are tough. They are intense, but they are fun if you make them fun. You have to go hard and give it all you’ve got.”

Maybe it’s that attitude that gives Gross reason to grin.

“He just kills it in the weight room,” Gross said. “He kills it. He’s unlike anybody I’ve ever seen.”

Chandler was born 21/2 months premature and diagnosed with cystic fibrosis when he was two years old. His diabetes likely is a spinoff from the cystic fibrosis, which is a defective gene that causes the body to produce mucus to build up in the lungs, digestive tract and other areas of the body. According to the A.D.A.M. Medical Encyclopedia, cystic fibrosis is one of the most common chronic lung diseases among children and young adults. It’s also a life-threatening disorder.

As a result, Chandler occasionally requires hospitalization. It was during one of those episodes he made his first impression on Gross, who was just starting at Wilson.

“I had a note in my box one day and it was from William,” Gross said. “It said that he wished he could be here and that he wanted to start workouts and play football for me.

“He’s in the hospital and he’s thinking about not getting to lift weights. That’s kind of his commitment to me and football. He doesn’t want to miss anything. That’s a note I’ll keep forever.”

Despite his medical situation, it’s not surprising when Chandler was in the fourth grade he asked his parents if he could play football. His father, Jerry Don, played at Coffee High School. William said his mother, Patricia, a teacher at Wilson, also liked to play football with the neighborhood kids when she was growing up.

“I wasn’t surprised because he’s always loved sports,” Patricia said. “He was so little, though, we thought he would never make it.”

Patricia said doctors encouraged her to push William to be active.

“They said, ‘Don’t hold him back,’ The thinking used to be that CF kids needed to stay inside and not go anywhere or do anything, but then they realized they were just sicker for that,” Patricia said. “The more they do, the healthier they are. William is remarkably healthy.”

Doctors warned the Chandlers that William would require frequent trips to the hospital and he’d be taking a lot of different medications.

“He’s such a trooper that it doesn’t even faze him,” Patricia said. “As a parent it’s hard to watch but he has such a good attitude about it I feel like he helps others.”

William uses a nebulizer for breathing treatments each night before going to bed and morning when he wakes up, takes insulin daily and carries an inhaler. He has a medical port in his chest to help with the frequent shots he takes.

Nothing seems to slow him down, and there is nothing William won’t try.

“We were getting ready for the first game against Lauderdale County and I needed a defensive end,” Gross recalled. “His hand went up and I put him in. I told him to take tackle dive, and he’s never been coached on it but he hits it perfectly. He did it because he wanted to and that’s what his coach asked him to do. That tells you all you need to know about him.”

William seems unfazed by having his story told.

“I’m just a regular kid,” he said. “I try to stay active, and I try to give it all I’ve got.”

Football season ends this week for the Warriors, but that only means William trades a football jersey for a basketball jersey.

“In basketball, it’s just run, run, run, run,” Gross said. “Everything he does is like that. Seeing the stuff he does, he gets the most out of life. I love that little dude, man.”

Gregg Dewalt can be reached at 256-740-5748 or gregg.dewalt@TimesDaily.com.

http://www.timesdaily.com/stories/Warrior-at-heart,183571

Pharmaxis has announced the Committee for Medicinal Products for Human Use (CHMP) has adopted a positive opinion recommending the granting of a Marketing Authorisation for Bronchitol, clearing the way for the product to be used in Europe “for the treatment of cystic fibrosis in adults as an add-on therapy to best standard of care.”

Pharmaxis expects the European Commission to confirm this opinion and grant the Marketing Authorisation for Bronchitol in January 2012.

Pharmaxis CEO Dr Alan Robertson welcomed the decision saying, “This outcome from the CHMP meeting is an important milestone for the company.  It is good news for the cystic fibrosis (CF) community which has supported us throughout the development of Bronchitol.  As the life expectancy of CF patients has lengthened, the size of the adult population in Europe has increased.  Bronchitol will be used for CF patients aged 18 and above, which represents about two thirds of all patients who could potentially benefit from the drug. Pharmaxis will undertake a short term clinical trial in children (age 6-17) with a view to extending the license to this age group.

“Bronchitol is a drug which was discovered and developed in Australia.  It is approved for marketing in Australia and is now set to become available throughout the 27 countries of the European Union.  This outcome represents the culmination of a great deal of work by many people.

“Pharmaxis will move quickly to commercialise Bronchitol in Europe.  We have established our supply and logistics arrangements and advanced launch preparations and pricing applications with our marketing partner, Quintiles.  The awareness of Bronchitol’s clinical data amongst CF clinicians has increased through publications and presentations at scientific conferences.  European clinicians provided valuable support to the CHMP decision and are looking forward to Pharmaxis bringing this new therapeutic treatment option to their patients in the near future.” Dr Robertson said.

Professor Stuart Elborn, President of the European Cystic Fibrosis Society, stated; Life expectancy in cystic fibrosis is improving but there remains an urgent need for new therapies which can improve lung function and reduce exacerbations.  Bronchitol increases mucociliary clearance and will be the first approved therapy in Europe with this mechanism of action and has been shown to improve both lung function and reduce exacerbations when added to standard medications in use today.  I welcome this decision by the CHMP.”

Robert J. Beall, Ph.D, President and CEO of the American Cystic Fibrosis Foundation said;The Cystic Fibrosis Foundation is delighted to see an important new CF medicine being made available to patients in Europe.  It takes a lot of dedication from industry and the CF community to develop a drug to this point.  We are proud to have played a part in this process through our clinical trial group and look forward to Bronchitol being submitted to the FDA early next year.”

Bronchitol’s approval for the treatment of cystic fibrosis patients in Australia and the European Marketing Application are based on the results of two Phase 3 clinical trials involving more than 600 people and conducted in 95 centres throughout the world.

Click here to download the media release

Click here for more information about Bronchitol

http://www.pharmaxis.com.au/company-highlights#profile1

OTTAWA, Oct. 19, 2011 /CNW/ – When it comes to health care and health research, Canadians have much to be proud of. We have an incredibly rich history of discovery and achievement.

To celebrate those whose extraordinary contributions have made the world a better place, The Canadian Medical Hall of Fame honours a select few every year.

The Canadian Medical Hall of Fame – the only one of its kind in the world – is proud to announce that its 2012 inductees are:

Dr. John James Rickard (J.J.R.) Macleod (1876-1935)

Terry Fox (1958-1981)

Dr. Armand Frappier (1904-1991)

Dr. Peter T. Macklem (1931-2011)

Dr. John Dirks

Dr. F. Clarke Fraser

Dr. Lap-Chee Tsui

Dr. John James Rickard (J.J.R.) Macleod is now recognized for collaborating in one of the most important breakthroughs in medicine.  Known internationally at the time for his research in carbohydrate metabolism and physiology, Dr. Macleod was recruited to the University of Toronto where he directed the research that led to the discovery and clinical use of insulin as an effective therapy for diabetes. Following the breakthrough in 1922, Dr. Macleod shared the 1923 Nobel Prize in Physiology or Medicine with Dr. Frederick Banting.

Terry Fox‘s run to raise money for cancer research in 1980 is an enduring symbol of the commitment and determination of one individual to find a cure – shared now by millions of people who participate in Terry Fox events all over the world. Today, the Foundation in his name has raised hundreds of millions of dollars. Terry’s father and brother, Rolly and Darrell, will accept the Hall of Fame honour at the induction ceremony in Toronto in March.

Dr. Armand Frappier was a driving force in the deadly battle against tuberculosis and in the 1930s became an advocate for full-scale, anti-tuberculosis vaccinations in North America. He founded the first institution dedicated to medical research in Quebec, now known as the INRS-Institut Armand-Frappier. During the polio epidemic of the 1950s, he introduced the Salk vaccine. Dr. Frappier is also recognized for his work in the development of freeze-drying human serum in collaboration with the Department of National Defense and the Canadian Red Cross during WWII.

Recognized worldwide as a giant of respiratory medicine, Dr. Peter T. Macklem‘s work constitutes the scientific foundation for our ongoing campaign against smoking. Having led a brilliant career at McGill University Health Centre’s Royal Victoria Hospital, Dr. Macklem forever changed the face of respiratory medicine by pioneering the study of small airway physiology and identifying the early pulmonary damage caused by smoking, among other contributions.

Dr. John H. Dirks of Toronto has elevated Canadian and international science and education to unprecedented heights. He is perhaps best known for transforming the Gairdner Foundation International Awards, often referred to as ‘Canada’s Nobel Prizes’, into one of the most prestigious awards programs for medical research in the world. In a career now spanning five decades, Dr. Dirks has made huge impacts in every field he has touched, including scientific and academic achievements in nephrology (kidney function and disease).

Raised and currently living in Nova Scotia, Dr. F. Clarke Fraser is an iconic figure in Canadian medicine and was one of the creators of the discipline of medical genetics in North America. He founded the first Canadian medical genetics department in a paediatric hospital, aptly named the F. Clarke Fraser Clinical Genetics Centre at McGill University, in 1995. He also laid the foundations in the field of Genetic Counselling, which has enhanced the lives of patients worldwide.

Dr. Lap-Chee Tsui made what is described as the most significant breakthrough in human genetics in 50 years, namely the discovery of the cystic fibrosis gene. Born in Shanghai, China, and coming to the University of Toronto and the Hospital for Sick Children in the early 1980s, Dr. Tsui has made extraordinary contributions to science through his discoveries and is a leader in developing the field of genomics in Canada and throughout the world.

To help celebrate the occasion of this announcement, over a dozen Hall of Fame laureates from past years were kind enough to share their views on the state of health care and health research in Canada. Their intriguing and insightful comments are summarized in the accompanying document.

The seven inductees announced today will join the ranks of 88 laureates who have been similarly honoured since 1994.

“These individuals have truly made a difference in the lives of Canadians, and indeed, people around the world. They have blazed trails, inspired others to follow, and extended the boundaries of medical knowledge and health care,” said Dr. Cecil Rorabeck, Board Chair of the Hall of Fame. “We are in their debt, and we honour them for their great service to humankind.”

The 2012 Induction Ceremony, presented by BMO Harris Private Banking, will be held for the first time in Toronto on March 21. Over 500 of Canada’s leading citizens will join honourary chair Dr. David Naylor, University of Toronto President, committee chairs Dr. Catharine Whiteside, Dean of the Faculty of Medicine at the University of Toronto, and Dr. Mark Poznansky, President and CEO of Ontario Genomics Institute, and other distinguished guests for an evening of inspiration and celebration.

Biographies of the inductees are available at http://www.cdnmedhall.org/induction

About The Canadian Medical Hall of Fame 
Established in 1994, The Canadian Medical Hall of Fame is the only national Hall of Fame in the world dedicated to celebrating medical heroes. By creating an enduring tribute to those men and women who through discovery and innovation have contributed to better health in Canada and the world, The Canadian Medical Hall of Fame inspires the pursuit of careers in the health sciences fostering future innovators and leaders.

About BMO Harris Private Banking
BMO Harris Private Banking is a team of remarkably talented and passionate professionals with diverse expertise who are dedicated to creating a profound impact on the lives of their clients.  Backed by the heritage, stability and resources of BMO Financial Group, professionals at BMO Harris Private Banking are responsible for the successful management of wealth by providing expert advice and highly personalized services in banking, investment management, estate, trust, succession planning and philanthropic services – all in a coordinated and confident approach.   BMO Harris Private Banking challenges successful Canadian families to take action on what’s important to drive exceptional outcomes and make the most of the opportunities wealth provides.

Read more: http://www.digitaljournal.com/pr/458672#ixzz1bKPJJzCw