“Now more then ever we need to stay focused on our mission for CF.”

 I am a 36 year old living with cystic fibrosis (CF). I was diagnosed with CF at age 5 but have never let CF rule me, I rule my CF! As an adolescent I figure skated for the United States on the National, International, & Junior World team. All the exercise kept me very healthy into adulthood.

The advancements in drugs and treatments helped me to shatter the prevailing life expectancy of 8 years when I was diagnosed. But, now I am at the stage in my health that I need a double lung transplant. I have been active on the transplant list nearly two years. My daily regimen consists of three vest treatments, walking two miles on the treadmill, lifting weights, and enjoying life! My energy may not quite be what it used to be but I am not going to give up the fight! I want to be in the best shape that I can for transplant.

While I am waiting for “the call” for transplant, I spend time volunteering for CF Foundation events. I am one of the committee members for the Celebrated Chef’s Gourmet Dinner. I have volunteered and attended the Breath of Life Gala, walked in the Minneapolis Great Strides, 2010 TC Finest nominee, and cheered on friends and family at the Climb for a Cure.

 I also volunteer at LifeSource. LifeSource is the organization that coordinates transplants in Minnesota, the Dakota’s and a portion of Wisconsin. I speak to nursing students, at high school health classes & driver’s education classes to educate people about making an informed decision to check the “donor document of gift” box on their driver’s license.

It is always rewarding for me if I am able to help a family understand that you can still live your life even though you have CF. I am happy to do my part helping CF Foundation in their search for a cure. The good work of the CF Foundation has helped to greatly increase the number of tomorrows for those diagnosed with CF. By helping to spread awareness and raising money for CF, my dream is one day CF patients won’t have to talk about transplants because we will have helped to cure this terrible disease.

Now more then ever we need to stay focused on our mission for CF. Speaking about CF and organ donation may bring a cure or a shorter wait on a transplant list. I challenge you to help me and the other 30,000 American’s living with this disease by raising money and spreading awareness so one day we won’t have to talk about transplants because CF will stand for “cure found”.

 I have started a blog to share my journey of living with CF while waiting for transplant. If you are interested you can follow by simply entering your email to receive updates at: www.nikkisnewlungs.com

Thank you to the CF foundation! You may also view the newsletter in its entirety. It includes upcoming event dates and updates. Click on the link: CF Newsletter-May Edition