Lauren Beyenhof, 28, recognizes that cystic fibrosis (CF) has profoundly shaped the choices she has made in life, but it has never defined who she is as an individual.  Diagnosed at birth, Lauren’s positive outlook on CF and all the subsequent challenges she faces, make her an inspiration to everyone around her.

As a professional writing freelancer, Lauren has used her love of writing to reach out to others in the CF community.  She has two CF related blogs: Breathing Deeply and Blogging About CF.  She has also been interviewed by ABC.com for an article about cross-infection in CF patients and had an article featured on Adoption.com about CF newborn screening.

Lauren is committed to maintaining a strict medical routine in order to stay healthy.  She does airway clearance, nebulizer treatment and takes enzymes and multivitamins with every meal.  She also works out with a personal trainer three days a week to improve her lung function, doing cardio machines and lifting weights to improve her upper body strength and to build muscle.

Lauren lives each day by the motto: “You never know how much you can face until you turn around and see that it’s now behind you.”  She attributes her strength and ability to overcome the “humps” in her life to her strong faith in God, the support of her loving husband, Brad, and to her family.

Heroes of HopeT 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 50 outstanding individuals with CF in over 35 states.  Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities. To learn more about Lauren and to listen to her podcast, click here.

Learn more about Lauren

Click here to access Lauren’s personal Heroes of Hope Web page. www.heroesofhope.com

Robyn is a gifted 17-year-old student and musician who focuses on keeping herself healthy by managing her chronic disease cystic fibrosis, while still pursuing the activities she loves. Diagnosed with CF since birth, Robyn has learned to work around the limitations of the disease with lots of determination and the help of her family and CF care team.

Robyn has always been a fighter. For 15 years, Robyn endured tube feedings, which are a way of providing nutritional support with a nutrient dense liquid delivered through a tube directly into the stomach. Robyn accomplished a major personal victory when she was able to eat enough food orally to be able to remove her gastronomy feed tube, which happened in January of this year!

In addition to the time-consuming CF regimen that she undertakes daily, Robyn stays very busy with school, music and community service. She began playing the violin in first grade and continues to play in her high school’s orchestra. Robyn is also heavily involved in community service, working on diverse programs, including “Nothing But Nets,” an organization to help prevent the spread of malaria, and volunteering at her local battered woman’s shelter. Next fall, Robyn plans on attending the University of California, Davis where she will major in nutritional science.

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 48 inspiring individuals with CF in over 35 states. Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities.

Learn more about Robyn

Click here to access Robyn’s personal Heroes of Hope Web page. www.heroesofhope.com

Risa Pine does not let the challenges of cystic fibrosis (CF) stop her from helping others around the world, even at the age of 49. As someone who has a disease in which the average lifespan is 37-years-old, Risa knows that she is fortunate, and also knows that she must stay committed to her taking care of herself in order to stay as healthy as possible . Risa enjoys pilates, yoga, meditation, free weights, working out on her elliptical machine and long walks. Each day, she must take a variety of transplant medications and vitamins.

“Taking care of my CF always comes first. I know that this will enable me to do all the things I want to do in life and will help me to live longer,” said Risa. “My state of mind affects the health of my body, so I need to create a positive environment in my life so I can continue to enjoy all the things I’m passionate about.”

Risa wants to remind others with CF that there is always hope. Risa is an inspiration to those in the CF community through her eternal optimism and determination to make every day count.

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 48 inspiring individuals with CF in over 35 states. Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities.

Learn more about Risa

Click here to access Risa’s personal Heroes of Hope Web page. www.heroesofhope.com

Stacy Motenko has spent 17 years working hard to raise money and support for research for cystic fibrosis, showing that she is not only living with her disease but fighting it everyday.

At only 21, Stacy has already made headway in achieving many of her goals. In addition to graduating from the University of California at Santa Barbara with a degree in communications and a minor in applied psychology, she now works at the San Diego Chapter of the Cystic Fibrosis Foundation (CFF), where she is a Special Events Coordinator, helping to plan and execute their annual fundraising events.

“Having CF has given me a different perspective on life. It’s made me closer to my family because we’ve been through so much together, and it’s also given me a greater appreciation for the little things in life and made me try not take anything for granted,” said Stacy.

As committed as Stacy is to helping others in her professional career, she also is committed to helping herself stay as healthy as possible.  Each day she focuses on making positive choices and being strong, subscribing to her favorite quote “you must BE the change you wish to see in the world.”

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 47 inspiring individuals with CF in over 35 states. Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities.

Learn more about Stacy

Click here to access Stacy’s personal Heroes of Hope Web page. www.heroesofhope.com

An 18-year-old high school senior, Mandie Rudd seems like a typical teenager, busy with sports, school, and hanging out with friends, but in addition to normal challenges of life, she deals daily with the chronic condition of cystic fibrosis (CF).

Mandie makes staying compliant and healthy a priority. Waking up early to squeeze in treatments and multi-tasking while doing medications are some tips she offers to other busy teenagers. Besides sticking to her medical routine, Mandie exercises to keep her lungs strong, playing on her high school volleyball, basketball and track team.

A firm believer in giving back to the community, Mandie and her sister Natalie, who also has CF, have participated in the Cystic Fibrosis Foundation’s Great Strides®, a national run/walk that raises money for CF research, volunteered for Limbs of Hope, an organization which donates prosthetics to individuals in need, and is a Wish Ambassador for Make a Wish Foundation. As a Wish Ambassador, Mandie helps make wishes come true for children with life-threatening illnesses and was also a wish recipient, traveling to Thailand with her family to ride elephants and explore the jungle.

Mandie’s wish now, which she is very close to fulfilling, is going to college and working in the field of dentistry. Getting into the college of her choice has been her proudest accomplishment. Mandie’s advice to other teenagers with CF who want to go to college and pursue their interests is to be consistent and on track with their medical routines and to embrace CF as something that you just have to deal with. She describes CF as always running by her side, pushing her to train harder in sports and in pursuing her goals.

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 nearly 50 outstanding individuals with CF in more than 35 states. Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities.

Learn more about Mandie
Click here to access Mandie’s personal Heroes of Hope
Web page. www.heroesofhope.com

A determined and talented teenager, Chase, age 17, doesn’t let CF stand in the way of pursuing his goals. In addition to the demands of Chase’s full schedule that includes part-time job at a restaurant and schoolwork, he juggles an intense medical regimen of inhaled medications and antibiotics that requires hours of his time each day. He also participates in golf, weight lifting and baseball to help keep his lungs strong.

Not only does Chase eat to stay healthy and strong, which is essential for someone with CF, but food is also a passion for him. Chase apprentices under an award-winning chef at an exclusive restaurant in Baltimore , Maryland .

When Chase isn’t busy with school, cooking and sports, he gives back to the CF community. For the past two years, Chase has volunteered at the Maryland fundraiser called Country Concert, an event founded by the Cystic Fibrosis Foundation over 20 years ago.

By participating in activities he loves and staying positive, Chase has learned to live with the challenges of cystic fibrosis, and by now, it is just another part of his life that he takes in stride.

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 nearly 40 outstanding individuals with CF in more than 30 states. Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities.
Learn more about Chase
Click here to access Chase’s personal Heroes of Hope
Web page. www.heroesofhope.com

The newest Heroes of Hope recipient is Joseph Edge! At 12 years old, Joseph is already an accomplished, stellar student, athlete and star in his own community through raising awareness about CF and his volunteer work.
www.heroesofhope.gene.com

Are You a Hero that Rocks CF?

We all have people in our lives that motivate and inspire us. At the Rock CF Foundation, we continue to be amazed at the achievements and awesome attitudes of people in our CF community. For nearly four years, Genentech’s Heroes of Hope Living with CF program has recognized people with CF who exemplify heroism. Some of the past heroes raised money toward CF research, provided thousands of people with free CF legal advice and volunteered in their own local communities. Heroes of Hope award recipients are united by their common traits of maintaining a rockin’ attitude, proactively maintaining their health and making the most of their lives. We know that there are many more heroes out there in our Rock CF community waiting to be nominated by you.

As some of you may know, Heroes of Hope has recognized almost 40 individuals with CF across more than 30 states, including me! Anyone can nominate a person with CF to be a Hero of Hope – just log onto the newly-renovated Heroes of Hope Web site, www.heroesofhope.gene.com, to download and fill out a nomination form, and fax or mail it in. An independent Heroes of Hope Advisory Panel comprised of 7 members of the CF community regularly selects nominees to be Heroes of Hope recipients. In the past, Heroes of Hope recipients were recognized in small ceremonies.

This year, the program is moving online which will give everyone in the CF community access to the inspirational stories and advice of each Hero. Once selected as a Hero of Hope recipient, each will now receive the following distinction:

Heroes of Hope recipients will be able to record a downloadable podcast
A personalized page on the Heroes of Hope Web site for each recipient that will feature their podcast, a collection of their photographs and their biography
Heroes of Hope recipients will receive an award, a certificate and a t-shirt
Your story or that of your child will reach thousands of people in the CF community.

Who do you know someone that Rocks CF and is your hero? To nominate that person (or several people!) and to learn more about past award recipients, please log onto www.heroesofhope.gene.com today.

(Click pic to read full HOH Bio)

Emily is January 2007’s Hero of Hope!