Showing posts with label Heroes of Hope. Show all posts
Showing posts with label Heroes of Hope. Show all posts

Thursday, May 16, 2013

Megan Mobley

This month's Hero of Hope Living with CF, Megan Mobley, 25, is an inspirational young woman. Megan is passionate about her involvement in the CF community, raising over $4,000 last year with a new goal of $5,000 for this year. She hopes that the money she raises will help continue research that may one day find a cure. Megan also speaks to parents with newly diagnosed children to talk about her experience and encourage them to stay positive.

 

"Speaking to parents with newly diagnosed children is really important to me and something I love to do. I'm very positive with the parents I talk to. I tell them how active I am and how I'm still able to do the things I love to do. I also encourage them to think about CF care 20 years ago compared to now. We have come so far, and the landscape is only going to get better."   


Learn more about Megan
Visit http://www.heroesofhope.com to access Megan's personal Heroes of Hope webpage. 

To nominate your Hero 
Visit http://www.heroesofhope.com/nominate


Thursday, October 25, 2012

Lindsay Shipp



Heroes of Hope Panel member and cystic fibrosis (CF) advocate Stacy VandenBranden sat down with our newest hero, Lindsay Shipp, 28, and her mother, Barbara. They discussed how much determination and compassion Lindsay has towards everything she is involved with. Lindsay has never complained about her disease and has never allowed CF to identify who she is.

A favorite quote from Lindsay is: "There are days that are harder than others. Especially when I was younger, I was always scared for the future. People with CF have to appreciate everything that they go through, enjoy their lives, and reach for their goals."

To read more about Lindsay click here
To nominate your Hero click here

Wednesday, February 8, 2012

Brad Johns




This month's Hero of Hope Living with CF, Brad Johns, age 39, is an extraordinary man who was diagnosed with CF when he was a young boy. Living with CF all his life, Brad has a positive attitude that helps him overcome any obstacle. Brad is a hardworking teacher who is currently working on his doctorate in education. Working to further his education, Brad stays on top of his treatments with the support from his loving family. Never allowing CF to get in his way, Brad has accomplished so much throughout his life and has no plans on slowing down.

"Now that I am 39-years-old, I make sure I stay on top of my treatments so that I can lead the healthiest life possible. I would tell someone my age that it is important to have a positive attitude and keep focusing on the right things that keep you staying well. I always tell people to be more productive in life so that they can keep their body healthy. You have to find the time to do your treatments and get into that routine and stick with it each and every day. I don't necessarily like sitting with my vest on and doing my breathing treatments while my kids are playing in the house, but I have to remind myself that if I don't do my  treatments than I'm not only cheating myself, but I'm cheating my family."

To read more about Brad Click Here

To nominate your Hero Click Here

Wednesday, January 11, 2012

Dottie Lessard



This month's Hero of Hope Living with CF, Dottie Lessard, 44, is an inspiring woman whose CF journey has been truly inspirational. Dottie inspires young kids and teenagers with CF to stay fit and empowers them to take control of their health through her foundation "Dottie's Dream." Dottie is also a life coach, speaker and creator of Empower Pro Nutrition as well as an author. Weight lifting is what inspired Dottie to share her passion of exercise with everyone and hopes to continue motivating people with CF to remain active and positive and to never let CF get in their way of fulfilling their dreams.

"When I'm having a bad day I think to myself, why it is still tougher for me? I see people who are doing the same thing as me and it's hard to deal with. I try to be the best person out there and try my best to inspire someone else. I decide my own statistics and I figured out my own way to live my life to the fullest. Knowledge is the most important key and with that power you have the ability to look forward to the future. You have to think to yourself, how can we do this? Don't ever stop pushing and thriving for what you believe in. You have to find a way to stay strong. Live your life, embrace your challenges and gain strength by them. Don't let CF or your transplant define you."


Dottie is SO AMAZING!!!! I have had the pleasure of meeting her in real life, she is so inspiring... a true Hero. To read more about Dottie Click Here

To nominate your Hero Click Here

Friday, August 26, 2011

Kevin Bauereis



The newest Hero of Hope Living with CF, Kevin Bauereis, 28, who has worked hard his entire life, never letting CF get in the way of his dreams. As a testament to his work ethic, Kevin is currently completing his residency in anesthesiology and plans to become a pediatric anesthesiologist because he is passionate about working with kids and giving back. Struggling to accept having CF, Kevin had a hard time coming to terms with his disease and being compliant with his medication as a kid. It wasn't until meeting with his doctor who told him if he wanted to go to medical school and become a doctor, he would have to learn to make his health a priority before helping others.

"Setting goals and working towards your dream is the best thing you can do because it will help you focus on the future. I used to dream about being a doctor all my life and I can now say that through hard work and determination, I accomplished my dream. Not once did I let CF stand in my way. CF should never be an excuse for somebody not reaching their dreams. We may not live a long life but we can live a dream-fulfilled life. No matter how big your dream is, go after it with 100% motivation and effort because if you do, your dreams can come true."

Heroes of Hope™ Living with CF recognizes individuals with cystic fibrosis (CF) who live full and productive lives while managing their healthcare needs. To date, Heroes of Hope has honored more than 70 outstanding individuals with CF around the United States. Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities. 


To learn more about Kevin
CLICK HERE.


To nominate your Hero CLICK HERE




Wednesday, June 8, 2011

Toni Harris


tn.jsp.jpg


This month's Hero of Hope Living with CF, Toni Harris, age 48, is an exceptional woman who was diagnosed with CF when she was 39-years-old. Even though she was diagnosed later in life, Toni has an amazing positive attitude and fearless nature, taking on any obstacle that stands in her way. Never allowing CF to get in her way, Toni makes sure she keeps as active as possible and welcomes any sort of adventure that can push her limits. Toni has even developed a list of things she would like to accomplish. The number one goal on her list: Skydiving. I had the pleasure of interviewing Toni over the phone and we could of talked for hours, she is truly amazing and very inspiring

"I live by this motto every day: Live life without expectations. If you live life without setting such high bars, you will never be disappointed.When I wake up, I know I am blessed and when I'm having a bad day, I don't care because I'm still blessed. It is important to keep a positive attitude because it is the biggest determinant of how much we can accomplish. I live my life not allowing people to feel sorry for me because I refuse to be labeled or put into a box. When I'm having a bad week or couple of days, I'll keep to myself.  I want the world to see me as a strong, working, independent woman who is capable of doing everything."
   
Heroes of Hope™ Living with CF recognizes individuals with cystic fibrosis (CF) who live full and productive lives while managing their healthcare needs. To date, Heroes of Hope has honored more than 70 outstanding individuals with CF around the United States. Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities. 


To learn more about Toni, Click HERE

To nominate your hero, Click HERE



Thursday, May 5, 2011

Sofia Levy


This month's Hero of Hope Living with CF, Sofia Levy, age 17, is truly an inspiration to young people her age. Having recently been diagnosed with cystic fibrosis related diabetes, Sofia saw it as an opportunity to reacquaint herself with the CF community and not let it affect her life in any way. Sofia is currently finishing up her last year in high school andapplying to colleges. She has her eye set out on one, but knows she will be happy with whatever university she ends up attending. Having been exposed to medicine all her life, Sofia dreams of becoming a pediatric nurse one day because she knows she can bring a lot of life experience to the profession. Sofia plans on dedicating her life to helping other people and believes her experiences are best suited to that nature.

"Having CF hasn't always been easy for me and I struggled saying it out loud. Now that I am applying to college, I've come to the realization that this is who I am, there is no escaping CF. I was really stressed about going away to college and having a roommate and just living a very out in the open lifestyle. I have come to a point in my life now where I am very comfortable with having CF because this is a huge part of me and will only help people better understand who I am and where I've come from."

To read more about Sofia click HERE

To nominate your hero click HERE

Tuesday, April 19, 2011

Who's your hero?





A new and even easier way to nominate your CF hero... 

Click here to visit the new online nomination form.


Heroes of Hope are individuals who serve as role models and portray hope to others with CF while proactively maintaining their health. They are motivated to live life to the fullest and do not let the limitations of CF get in their way of pursuing dreams. We all know heroes in the CF community who are deserving of this award, so nominate someone today! What are you waiting for?!?!....

Monday, February 21, 2011

Kathleen Burke


Heroes of Hope Panel member and cystic fibrosis (CF) advocate Isabel Stenzel Byrnes sat down with our newest Hero with CF, Kathleen Burke, 20, to listen to her story and hear how she has been successful in balancing schoolwork as a junior at Drew University, volunteering, her theater classes and taking care of herself. Kathleen is being recognized for her attitude and many theater accomplishments, including winning the Young Rep Outstanding Senior Award in 2008 and the 2010 Robert Oxnam President’s Playwriting Award.
Isa: I’m so excited to talk to you and learn about your amazing, full life. Can you describe for me a typical day for you in college?
Kathleen: I am theater major in college, and so I go to rehearsal daily, and I spend time writing plays. I’m in a show right now so pretty much my schedule is like one long “to do” list: do treatment, go to class, go to rehearsal, do treatment, do homework, eat, go to class, go to rehearsal, do treatment, go to bed. Our rehearsals are 4 hours a night everyday through Tuesday-Friday and 6 hours on Saturday and Sunday. That’s all I have time for, but I’m really enjoying being so busy.
To read more of this fabulous interview click HERE

To nominate your hero click HERE

Friday, January 21, 2011

Max DeLawyer

The newest Heroes of Hope Hero.....

I had the pleasure of interviewing Max last June, he is such a great inspiration and a definite hero. He started college this fall and is an AMAZING runner. Read a little bit of our interview below.



Max DeLawyer

Heroes of Hope Panel member and CF advocate Somer Love sat down with our newest Hero, Max DeLawyer, 18, to discuss the challenges that young adults with cystic fibrosis face and how he has been successful in balancing his disease management, sports, schoolwork and a busy social life.
Somer: Congratulations on being named a Hero of Hope! You have such an amazing, positive attitude and I’m really impressed by all your great accomplishments. Can you give us a quick snapshot of your experience with CF so far?
Max: Thanks, Somer. I was diagnosed with the disease at 6 months, so I don’t ever remember living my life without CF. In some ways, I think that is easier because I (and my family) have had my whole life to get used to dealing with the challenges of it. Twice daily, I do my treatments of inhaled therapies to help with airway clearance. I also use a vibrating vest, and when I go camping or it’s not practical to bring the vest when traveling, I use lightweight, portable airway clearance devices. I also view my daily running as a part of my health routine. I think that running is incredibly important to help me feel my best mentally and physically.

To read more of our interview click here
To nominate your hero click here

Monday, September 20, 2010

Kate Sneddon



This month's Hero of Hope Living with CF, Kate Sneddon, 16, is an exceptional teen who is balanced, positive and compliant with all treatments that her chronic disease of cystic fibrosis demands. She was named a Hero of Hope, not only because of her dedication to her health, but also because of her academic, community service and athletic accomplishments. She is also an excellent student with an "A" average, a talented artist that has displayed artwork regionally, a dedicated volunteer for the Cystic Fibrosis Foundation and a hardworking athlete in several sports.

"I wouldn't call myself a super teen by any means, but I strive to do my best so that I can be proud of everything that I do," said Kate. "In a way, CF has given me perspective. I'm not glad that I have CF, but it's helped me to be glad for what I have versus wanting what I don't have."

Heroes of Hope™ Living with CF recognizes individuals with cystic fibrosis (CF) who live full and productive lives while managing their healthcare needs.  To date, Heroes of Hope has honored over 70 outstanding individuals with CF around the United States.  Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities. To learn more about Kate, go here  www.HeroesofHope.com.

To nominate your hero click here


Wednesday, July 28, 2010

***Patti Prince***

CONGRATS PATTI!!!!

This month's Hero of Hope, Patti Prince, 28, faces the unique challenges of the chronic disease cystic fibrosis (CF) with determination and strength. Patti, who lives in New York with her husband and son, has a willingness to share her story, and offer support to others in similar situations, which makes her an inspiration to the CF community and beyond.

"Patti is a shining example of a Hero of Hope," says Ana Stenzel, Heroes of Hope Living with CF panel co-chair and CF patient. "Throughout her life she has shown resilience and determination to pursue her dreams. She has had to face difficult challenges in her life, but her positive attitude has brought her to where she is today. As a transplant recipient, she demonstrates compliance to her health regimen and gives back to the community with commendable mentorship of other CF patients facing the transplant journey. It is an honor to select Patti Prince as a Hero of Hope."

To read more about Patti click here

To nominate your Hero Click Here

Friday, June 25, 2010

Alysoune Coleman

The Current Hero of Hope

"Everyone should be involved in something they enjoy," Alysoune says. "Just because you have CF doesn't mean that you have to sit at home and be closed off. I love playing sports, which inspire me and give me a goal to work toward. Sports have helped me understand the importance of my health maintenance routine to my overall health."

Alysoune Coleman

Alysoune Coleman is an active, outgoing 13-year-old from Arizona who enjoys the outdoors and loves athletics. Despite living with the chronic illness cystic fibrosis (CF), Alysoune approaches life with a positive attitude and a smile. Dr. Joan DeCelie-Germana, director of the Cystic Fibrosis Center at Schneider Children's Hospital in New Hyde Park, New York recently had the opportunity to chat with Alysoune and learn more about this inspirational Hero.

I know you are a really active junior-high student. What are some of the things you like to do?

I am in my third year of running track, and I love it! I run with a track club called the AZ Flames and recently achieved my personal best time in the 800 meter event. I also like to play soccer and tennis and enjoy playing the piano.

How do you balance your busy schedule while still maintaining your health?

Staying on top of my medications is definitely a priority, and I get up early every morning to do my breathing treatments before school. With all my activities, I was having some trouble keeping my weight up. So my doctor had a G-tube put in and that has helped me a lot. I also have diabetes, so I make sure to keep an eye on my blood sugar, especially during sports when it tends to fluctuate.

What motivates you when things get a little tough?

I just tell myself that if do my best every day, that is all that I can do. My attitude can help change how I see the tough stuff in life.


To read more on Alysoune click HERE


To Nominate your Hero click HERE

Thursday, May 13, 2010

Hero of the Month


EMILY INGRAM

This month's Heroes of Hope Emily Ingram, 16, of Texas is truly committed to being an agent of change in her community. She manages CF with grace and maturity far beyond her 16 years, in addition to adeptly juggling the demands of a challenging academic load, busy social life and full load of extracurricular activities.

To read more on Emily and hear her story click here

To nominate your hero click here

Thursday, April 22, 2010

Hero of the Month


Paul Quinton Ph.D. is a professor of pediatrics at University of California San Diego, and a professor of biomedical sciences at University of California Riverside, where he works to advance the understanding of the chronic illness, cystic fibrosis (CF). Dr. Quinton's interest in this genetic disease stems from his own diagnosis with CF when he was 19 years old. While he is 65 years old, the median lifespan for CF is 37 years. Dr. Quinton is recognized for his work in discovering the defect in the CF gene that prevents chloride molecules from entering and exiting affected cells. His research explained why the sweat of patients with CF is abnormally salty and has helped us understand that this illness is a disease of abnormal salt movement that is associated with abnormal mucus. We recently had the opportunity to talk to Paul, and learn a little bit more about this tremendous Hero of Hope.


To read more about him and hear his podcast click HERE


Thursday, February 25, 2010

Hero of the month



On Nov 16th I had the pleasure of interviewing Jan White she is truly amazing and a hero to so many. I am so glad I had this opportunity to get to know her she inspires me in so many ways...

Janice White, or Jan to those that know her best, is a 48-year-old woman living with the chronic illness, cystic fibrosis (CF), a disease in which the median lifespan is 37 years. Through her selfless service to others and enduring positive outlook and attitude, Jan inspires all those whose lives she touches. We recently talked to Jan to learn a little bit more about this amazing Hero of Hope.

Jan, what are some interesting things about you?

I have a Masters of Education in Speech Language Pathology and have worked for many years in this field, including with people who suffer from brain injuries and with the elderly living in long-term care facilities. Due to infection control issues, I no longer work with patients and now work for the state of North Carolina, where I help ensure that governmental policies are going to best benefit these patient populations.

Can you tell us a little bit about your experience with CF?

In terms of CF, my story is actually very different than most as I was not diagnosed until I was nine years old. My older sister was misdiagnosed for three years, and her eventual diagnosis became the catalyst for my being tested. Sadly, she passed away at the age of 17. None of my three older siblings have CF, though one of my brothers is a carrier.

In 2003, a new chapter opened up for me and I received a life-changing double lung transplant. In January, I will celebrate my seventh anniversary with my lungs!

How has your CF health routine changed since your transplant?

Before my transplant, a typical day included nebulizer treatments and chest percussive therapies multiple times a day, many medications and an exercise regimen. Since the transplant, I still focus on being compliant to my health routine, but the improvement in my health has allowed me to make some adjustments. I now take daily transplant medications and maintain my exercise program, which is a big part of my life. I work out at the gym regularly, but I also like to take walks with my dogs to keep exercise fun. Listening to my body and my doctor is also imperative, and I take the time for rest and relaxation when needed.

Your service to others is exceptional. Please tell us about some of the organizations you are involved in.

I work with the Carolina Donor Services, a procurement agency on the east coast, and the Sweet Melissa Fund, an organization at the University of North Carolina which raises money for transplant patients. I also help with fundraising for the Brain Injury Association of North Carolina, and lately have become active with the Amyotrophic Lateral Sclerosis (ALS) Association, an organization dear to my heart as a close friend was recently diagnosed.

With a full workload, social life and the need to take care of your own health, how do you find the time to squeeze everything in?

As a post-transplant patient, it is very important for me to give back to the CF community and to other people in need. Now that I have the energy, I want to use it to help those that don't have the same luxury.

What is the motto you live by?

When my sister passed away, I was in the hospital chapel where a placard on the wall read, "Never put a question mark where God has put a period." Those words resonated with me, and ever since then I try not to question what I have been given. It's not always easy, but it is a good form to work toward.

Click HERE to read more about Jan and hear her podcast

Click HERE to nominate your Hero