Richard Weiss May 2008
Richard Weiss has dealt with the challenges of cystic fibrosis (CF) his whole life and has become a more resilient person because of it. His determination to take the best possible care of himself while living a full life serves as an encouraging model to other people with CF.
The Legacy of 65 Roses
Born in Montreal, Canada, Richard and his two brothers Arthur and Anthony were all diagnosed with the genetic condition of CF. When Richard was very young, his family moved to Florida where he continues to live. Richard and his family have a special place in the CF community since Richard unknowingly coined the nickname "65 Roses" for cystic fibrosis when he was 4 years old. When her sons were diagnosed, Richard's mother volunteered to work with the Cystic Fibrosis Foundation by soliciting donations. One day, unbeknownst to her, her young son Richard overheard her phone calls and when she got off the phone, Richard told his mother that he knew she was working for "65 Roses." The phrase caught on and now children with CF sometimes refer to their disease as "65 Roses" because it is easier to pronounce than the actual disease. Richard's nickname for CF created long ago inspired the symbol of a rose that represents the Cystic Fibrosis Foundation.
"As a person living with CF, it is great to be able to look up to someone like Richard who is incredibly upbeat and strong in spirit," said Somer Love, panel member of Heroes of Hope Living with CF. "He functions as a hero to many in his everyday life."
"Staying to the Cause" of Compliance
At 46 years old, Richard knows that one of the keys to staying healthy is staying compliant to his medical routine. Based on the most recent CF data, the average longevity of CF patients is 37 years old. Because CF can also affect the way food is absorbed, people with the condition often are advised to eat a high calorie diet. Richard makes sure that he fulfills his dietary requirements by following a 3000-calorie diet full of foods rich in nutrients. Richard also undergoes pulmonary rehab and enjoys going to the gym. His medical routine is incredibly important to staying well. Each day starts and ends with treatments that include inhaled medications, digestive enzymes and vitamins especially designed for people with CF. In all, staying faithful to taking his medicines and treatments takes up to 3 hours each day, but Richard describes adherence to his medical regimen as "staying to the cause." His older brother Arthur passed away in 1996 at age 36 due to CF complications. Richard and Anthony (now 42 years old) learned from Arthur what it meant to fight for every day.
Balance is Key
Richard speaks to the idea of maintaining balance with cystic fibrosis through his happy marriage to Lisa and career. For Richard, his job gave him to opportunity to shine professionally and gave him a tremendous amount of pride and happiness. For teenagers and young adults, Richard offers some especially relevant advice relating to balancing a busy life with medical treatments and healthcare appointments: find something that you can truly enjoy and understand that you may have to be nimble and flexible in order to keep treatments at the top of the list. In college and while in the workplace, Richard would get up early to do his treatments and would occasionally work from home. After working for 20 years at Tampa International Forest Products, Richard recently retired to focus on his health.
"It's tough to stay compliant," Richard acknowledges, "but when you're fighting to stay strong and healthy, it should be your number one priority and everything else, job, school, etc., will fall into place."
Now retired, Richard spends his time exercising, spending time with his family and volunteering for a dog rescue group. Richard and his wife found a valuable member of their family through the rescue group - an energetic English Springer Spaniel named Keppie whom they adopted. Keppie is always ready to play and motivates Richard to go on long walks five times a week.
A Hero of Hope
Other than spending time with his family and helping the dog rescue organization, Richard participates in numerous activities in the CF community. With his affiliation to the "65 Roses" story, Richard has been the keynote speaker at fundraisers and events to raise awareness of CF. He talks openly about CF and believes that educating the public about the disease is extremely important. With his commitment to his health, positive attitude and perseverance, Richard inspires everyone around him, most especially his younger brother Anthony, who thinks of Richard as his own "Hero of Hope."
