It is that time of year and I need your help again!
Cystic Fibrosis is a genetic disease that continues to effect over 30,000 Americans, our mission is to cure cystic fibrosis and raise awareness about this rare, genetic, life-shortening disease that makes it difficult to breathe. We have made great strides over the last few years with over 15 drugs in clinical trials and a lot of positive results. The truth is, while medicine keeps extending the life of patients with Cystic Fibrosis, the quality of life can still be a struggle. With kids taking over 30 pills a day and having lung transplants in their 20’s there are still way too many that do not make it to adulthood.
With your support we raised over $50,000 last year! I cannot say thank you enough, but like a lot of rare diseases the foundation pays for all of their own research and we need your continued support to make the final push to FIND A CURE once and for all.
I would like to invite you again to join my team as a walker or financial supporter and help me raise even more money towards a cure for this devastating disease. Please visit my personal page and help me find a cure.
For those that are not aware of my personal story here is some additional info.
My daughters Kerragyn and Giavanna were diagnosed 14 years ago with Cystic Fibrosis. Last year unfortunately we were unable to walk but it was our 13th annual CF walk and even though it was virtual it was a great success. We have come a long way in the 14 years, the medicine continues to improve and we are seeing that in the results. As you get older the disease has a compounding effect but these new medicines have shown great success. The disease will continue to get worse and continue to effect both their lung function as well as their digestive system. There is no cure and we just try to keep them as healthy as possible for as long as possible.
This disease effects everyone differently. I would know, having identical twins who are having very different results. Giavanna has been in the hospital three times in the last six years. Fiver years ago it was to install a feeding tube and three years ago it is because of poor lung function. Every visit seems to be longer and longer. On the flip side, Kerragyn has been lucky. With the treatments and medicine working for Kerragyn, we have had very few set backs after our original three month stay in the hospital when she was born. But we have slowly watched her lung function slip and it is only a matter of time before she will be hospitalize for a “tuneup” as well.
13 years have come and gone by way too fast! They had to grow up way too quick, but I am proud to say that I have two of the strongest, kindest, most beautiful girls anyone could hope for. They will not stop fighting and I am asking you to help me continue their fight.
Thank you does not even start to convey my appreciation for the support, financially, emotionally and physically. This has been a very humbling experience and I continue to be shocked by how two little girls can have such a big impact on so many people.
I am asking you again this year to support my daughters as together we can find a cure for this awful disease that effects over 30,000 people.
PLEASE SUPPORT ME!
You can help in three ways:
- Come join us on May 11th at 9:30 a.m. in St. Peter for a walk to cure Cystic Fibrosis.
- Donate by clicking the link above. Show your support for my girls and the 30,000 Americans that are living with this awful disease.
- Spread the word, share this, and learn more about Cystic Fibrosis because without you we cannot cure this disease.
Here are some videos the girls made to share their journey. Please enjoy.
Thank you for supporting my family and God bless.