14 Years ago, I had a dream to find a way to make a difference. I wanted to find my purpose in the world and make my mark. Throughout my entire life I excelled in whatever I chose to do. CF was never a factor. 14 years ago, my health started to create a significant disability in my life. I needed a way to fight back. I created the Summit Foundation for Cystic Fibrosis for 2 reasons:
1. To find a way to raise funds that can then be donated to researchers who are trying to stop the progression of CF so that all patients born today can live a long life with little disability.
2. To control where donations go so that I can look my donors, sponsors and guests in the eyes and tell them – “You are helping me make a difference. You matter to me. Your hard-earned dollars will never be used for anything other than finding a way to stop CF. Thank you from the bottom of my heart for believing in me and in this cause.”
Having CF is like being born into a boat on the ocean with a lot of holes. In the beginning lung damage is less severe and the struggle to breathe is under control and this represents a big bucket to bail the water with but as time goes on the lung damage increases, killing off parts of the lungs not able to exchange air anymore – metaphorically these are the holes getting bigger and the bucket getting smaller and with a death sentence from birth – you literally drown.
I am in end stage CF and have a lung function of only 25% or in layman terms I am only able to breathe in less than one ½ liter of air. You, the healthy lot, can exchange at minimum 4 liters. A simple way to get a feel of what it is like to have CF – take that straw out of your drink, put it in your mouth, plug your nose and breathe for one minute.
Research equals the buckets to bail with and a cure would actually fix the holes. Right now, everyone born with CF has a boat with holes in it but with help from you through donations, attending events, sponsorships and sharing our message, that boat may someday have no holes and patients can all go on to graduate university, work in the industry, have children and maybe just maybe become a grandparent – something unheard of at present day.
Right now, we have not found a way to plug the holes, but we do have pretty big buckets to bail with. We need to find a way to plug the holes.
I would love to go out in my boat and never have to worry about the holes, but we are not there yet. With your part in this journey we can someday actually get there. I believe that wholeheartedly. Its too late for me as I will need a double lung transplant in the not so distant future, but not for the next generation. Will you help me plug those holes?
Tickets available by clicking here:
Nicki Perkins, CF Survivor of 45+years.
“Time to let your inner hero fly!”