Monday, February 7, 2011

State of the CFUnion

Dr. Robert Beall President CFF- 02/03/2011
State of Science address. Thank you for your hard work!
Hello all,

So, this blog has usually been about my transplant and will continue to be. Things on that front are going excellent. Working out, breathing great, it is a welcome change.

However, something I read the other day prompted me to perhaps share some insight into the CF community as I see it. What better a time then now, as last thursday the 3rd of February, I went to the annual conference for the Metro CF Chapter. This is a unique annual event since this chapter shares office space with the National Chapter. This allows all important folk at CFF to be present and to also present. Namely, Dr. Bob Beall, our fearless leader gave a state of the CF union so to speak. It was very informative and showed how hard people are working to find a cure for this disease. I will share some of his knowledge at the end.

So, I was reading a disturbing blog post the other day making reference to the CF population being fixated on the median life expectancy age of 37! Saying it was a negative statistic in that it might encourage patients to give up and parents of said patients to not encourage them to chase their dreams. I am paraphrasing, but this was the gist of it. I was taken aback. Being intimately affiliated with the CF foundation my whole life and also numerous CF individuals and families, I usually find one common characteristic. That is a never give up attitude. A fighting characteristic that this disease will never get the best of us and WE will live our lives! I have never heard one CF physician act as though a CF person should not strive for a productive and enjoyable future. This blog post made reference to doctors just consoling parents and saying "he probably won't make highschool". These certainly are not CF doctors at CF centers. If it was, I can assure said poster that Dr. Beall wants to know who they are!! And I implore you to name names!! Funding talks, and cynicism walks (or runs looking for another job ) In all seriousness, perhaps there are doctors in remote parts or clueless internists who have no clue about CF that perhaps might make a statement like this, but it is up to the parents to get thee to a CF Center!

37 is a huge Milestone. When I was born the life expectancy was just over 5 years old. This is when a small group of parents were just starting the CFF. Research was just starting and so was funding. These parents did not focus on that number, but instead said, "We will find a cure", I know this because my Mom, Gayle, was one of these original people. They paid no attention to a median age of 5 then, why would parents pay attention to a number like 37, now?? Bueller, Bueller????? As I approached 5 the median age jumped to 12, as I approached 12 to 17, 17-25, It was like I was chasing this number. I strived to catch it, surpass it, leave it in my dust. This was the same hopeful attitude that most of who I encountered strived for. However, this disease will catch up to you. You can not out run it. In one way or another it will get you...digestion, diabetes, sinuses, and most of all breathing. I know siblings who both had CF and now either the sister or brother are deceased and the other is still fighting. Yet both supposedly had the same care and treatment. Did one give up? There are people with CF from all walks of life from the best care to the worst care that have had differing outcomes. Why? Well, we are learning more about this disease everyday. The mutations, micro-mutations, the accessory genes that play a role in the outcomes. It is unfair to tell these people they did not try hard enough. The fact is the majority of CF patients are not here, they are deceased. Us Minority left need to continue to raise awareness and fundraising so 37 will turn to 45 and so on...I am 37 now, I have never passed the median age expectancy and now I hope I won't. Perhaps by the end of the year the age will be pushed to 40! This is just a statistic, but it is one that helps raise money, helps parents hope and dream and perhaps not worry about their child having a deadly disease.

Below is a link to the different drugs in the CF pipeline. Some of these are incredible advancements that should increase the quality of lives of people born with CF. Dr. Beall gave an amazing talk the other night. One thing he made me realize is the future of CF rests with us Adults who have CF! What a novel concept. It is no longer up to the parents to raise money, give money, and ask people for money. It is also up to us. It is no longer dedicated parents, volunteers, and paid employees of the CF foundation responsible for the future of this disease, but for the first time it will be us Adults with CF!! 37!! There are plenty of Doctors, scientists, researchers, CEO's, and lawyers who have CF and are closing in or passed 37! It is up to us to lead this disease into the future and make it a condition that one survives, not dies from. We are proof to those parents who have a child born with CF that anything is possible. So, lets get out there and raise awareness and money! :-) Walk don't run to and learn more...



Stacey said...

Vert well stted, Mitch! I agree with you completely...

Anonymous said...

Mitch that was a great post. You have a way of saying everything in a new and enlightening way. In all my years dealing with CF, only the surgeon who operated on you when you were one day old, was ever negative in your life expectancy or what you could accomplish. Everyone has always said "skys the limit" and I know we have always told you to follow your dreams. Love you so much. mom

Regina Morales said...

Hi Mitch

Thank you for that inspiring and moving post. I truly believe the same things. My name is
Gina Morales and I have a 6 year old little boy with CF (ryan). I was actually at your friend's (Cristin) Girls Night Out fundraiser for the first time on saturday. I had the wonderful HONOR (and I do mean HONOR) of meeting your wonderful mother and wife. I felt truly blessed to have the opportunity to speak in great detail with your mom and I truly appreciate all that she has done for this fight. You and your mom have played a significant part in making things better for my son so that he will surpass that number of 37. Thank you from the bottom of my heart. There are truly not enough words to say what I feel except thank you thank you thank you. Hopefully I will get a chance to meet you at the Rockville walk in May. Our team is Ryan's Renegades.

Take care and God Bless

Gina Morales - mom to Ryan, 6 yo with CF and fighting for a cure right along with you!

jean said...

Mitch this is so inspirational!. Your mission is huge ! We're behind you 100%! Much Love Jean

Anonymous said...

Hi Mitch,
It's Leah and as always, I am left feeling inspired by your words! Perhaps a book is in your future? You are able to truly express yourself so beautifully! I feel like I am right there with you all going through this! Thank you for sharing it with us.

You are right...anything is possible. I remember writing a paper on CF right BEFORE I met you and Rebecca at UF in 1995 or so...and SO much has changed since then - for the better! The life expectancy then was in the late teens/early-mid 20s, I believe. How amazing to see that it IS possible to impact change! I am behind you and Rebecca and your boys now and always. Love, Leah xoxo

Michael and Denise said...

I like it, very well put and what a true inspiration to all! We are so happy you are feeling well and doing great! On another note you know whose doing great, the gator basketball team! I know you have been watching :) smooches south florida