Team Reiter

Hello Friends & Family,

I am reaching out to you to raise awareness and financial support for the upcoming Great Strides Walk to Cure Cystic Fibrosis. This year the event will be taking place May 6th at Silver Lake Park East in Rochester. The walk starts at 9 am.

For the last couple years my annual letter has focused on the tremendous breakthroughs that have occurred in managing the symptoms of CF. Trikafta, a medication that became available in late 2019, has been a game changer for about 90% of the CF population. Most of us using Trikafta have a similar and exciting story that includes improved lung function, less infections, and a more promising outlook on living with CF.

Because of the improvement in managing the symptoms, the CF Foundation is slightly changing the focus going forward. The goal is to still find a cure for CF and not just treat the symptoms of the disease. For this reason, the CF Foundation is heavily investing in research around gene therapies that will address the root cause of the disease at the cellular level. Because of the success of Trikafta and other treatments, helping those with CF manage the disease as they age has become a new challenge and an additional priority for the CF Foundation. For people like me, CF has already done a lot of damage to our bodies and now part of the challenge is doing damage control as we get older. This past year was a vivid reminder that while my lungs are doing well and have remained stable, ancillary issues such as chronic pancreatitis and CF related diabetes are going to be an ongoing battle. As is their nature, the CF Foundation plans to continue to adapt their strategy to focus on the needs of the approximately 39,000 in the US with the disease.

Because there are only 39,000 people in the US with CF, the disease doesn’t get the attention that other diseases that impact more people typically get. Less attention also means less money for research towards a cure or treatments. This has always been the case for CF and is why the CF community has always relied on grass roots efforts to raise the funds needed to continue the mission. The efforts are working. Ten years ago, the median life expectancy for a person with CF was 38. Today it is 53\! That is amazing progress in just 10 years and I have no doubt the next 10 years will see similar improvement.

Last month my family and I attended the MN CF Chapter’s Annual Meeting where I was honored to be recognized with their CF Star award. This recognition is given to a person with CF for their efforts in raising awareness and financial support for CF. While the plaque may have my name on it, the credit really goes to all of you who have continually been very generous in financially supporting my efforts and the efforts of the CF Foundation. For that, I would like to say thank you for your past support and hope you will continue to support the CF Foundation to ultimately have CF stand for Cure Found.

I know Spring is a busy time for many and joining my family and I on May 6^th^ may not be possible. If you would like to support Team Reiter with a donation, I would be very grateful. 


Take care,
Phil, Jenna, Brooklyn, & Natalie Reiter