Monday, March 19, 2012


I have been working on the big CF video the last few weeks. I'm in the final phase - getting the music approved (we are hoping to get approval on one of two songs - both are major hits from the last decade or so). This is something I've been thinking about for a while. I wanted people to know what it's like to have CF and to learn what a day in the life of someone with cystic fibrosis is like. I think the video will teach but it will also motivate.

Norfolk went really well. I spoke for about an hour at their CF Education Day in Virginia. I got back yesterday. I saw my good friend Carin Simon while I was there. She looks terrific.

Some have said that you have seen me on TV lately standing up for Andrea and talking about Rusty. I know some of you have told me that I'm making a mistake by doing this and others have told me that I'm doing a good thing. I appreciate the advice and the support. I'm doing what I think is right and that's good enough for me.

I'll write more later in the week.

I hope that everyone is well.


Thursday, March 15, 2012

Guilty but Mentally Ill

A year and a half ago my friend Rusty was shot and killed for no reason. Today the man who did this has been put behind bars. Today Rusty Sneiderman has gotten justice. Rusty, I know that somewhere you are smiling with the news that the man who ended your life and hurt so many people will never be able to hurt anyone else again. I hope that this bit of news gives some type of closure to the entire Sneiderman family though we still have lost a wonderful husband, father, son, brother and friend.

Rusty, I promised I wouldn't write about the trial anymore so I'm not going to. I'm going to write about you. This is from the bottom of my heart. As I sit here, I don't know what to think. I'm crying right now because all I can think about was that I would rather this day had never come. I would rather that you be hanging out talking about the Browns draft or joking about your Wii fit. I'd rather you be giving Ian hitting tips for tee ball or telling me that you love my blog.

Rusty, I've gotten very angry over the last few months. 1) I've been very upset with how this trial was run and 2) I was angry because I had to see your murderer's face on the news almost every day.

I am sad right now that I can't see your reaction to the verdict. I am sad right now that you and I can't go to some dive and grab dinner. The last few weeks, I've had trouble even talking about this trial with anyone. I've probably pissed off a number of my friends. I wrote 2 blog posts and then stopped it there. I'm not an angry person but I have been so hurt with the way you and Andrea were portrayed. I have been nauseas lately just thinking about this trial. I've had to find innerpeace and was unable to do so.

Those people in that courtroom didn't know you. You would never have hurt your children. You and I used to joke how our kids ran our lives.

Sophia and Ian are going to be ok. I wanted you to know that. I will be there for them. A lot of people will. They are good kids. My kids love them to death. My Andrea and I love them to death.

We will remember you for the man you were and the person you made all of us become. Today, we got justice. You got justice. And while I assume I should be happy right now, I'm still mad. I'm mad that you're gone and the man who murdered you is still here. It just doesn't seem fair. I love you, buddy. I always will. Not a day goes by that I don't think about you. And while you had many dreams that you didn't get to accomplish, know that the people who you affected will accomplish them in your memory.

Sleep well my friend.



Wednesday, March 7, 2012

Lovin' the Show Me State

I had a terrific time speaking at CF Center Education Day in Missouri. I was the keynote speaker at the University of Missouri in Columbia (A place my Dawgs will be visiting in September for Missouri's first SEC home game).

The people were so nice. Special thanks to Erin (picture attached), Kecia, Natalie and Dr. Acton (picture attached). There were many more wonderful people. I spoke for an hour to a few hundred people (including several people with CF) about my life with CF and tried to inspire the group. I wore a mask while I spoke to promote safety and I was happy that all of the patients also wore their masks. Per Kecia, it was the best CF Day they've had since she's been there and many people were repeating things I said from my speech. I'm happy that my speech made a positive impact on people.

The funny part was they heard about fondness for gummy bears during my speech so attached was my award after speaking.

I made several contacts while I was there and I think I might have some more speeches coming up after Virginia and Ireland over the next few months.

Today I completed Day 53 of P90X. I can't believe that I only have 37 days to go. I recently saw that they have come up with P90X 2 or something like that. I'm not even thinking about that right now. I will say I feel really strong. I ran for 17 minutes on the treadmill, 15 minutes in place before that and did my hour of P90X all this morning and YES I still plan to do a light workout at lunch. If I'm going to preach about working hard in the gym when I give speeches, then it is up to me to practice what I preach.

I hope that everyone is well.


Thursday, March 1, 2012

Back to what made this blog special

I have decided that while I support my friend Andrea and believe in her very much and I loved Rusty very much that continuing to talk about this topic is not the purpose of my blog. This subject is extremely controversial and while it works for some blogs, it doesn't work for mine. That's not why people signed up.

The purpose of my blog is to give hope to people who are suffering with disease or emotional distress. In the future, starting today in fact, I will focus on what I do to stay strong with a terminal genetic disorder.

Thank you to those of you who gave your opinions whether they were pro-Andrea or not. I believe that everyone is entitled to their opinions. I hope that my friends and the followers of this blog understand my reasons for ceasing talk about this case. I just feel that the reason I started this blog is being compromised and it can't go on any further. I know that Rusty loved my blog and he always told me to keep writing about things that will inspire others. Buddy, I remember your words and starting today, that's indeed what I shall do.

I hope that everyone is well. Live your dreams and love your life!


Getting ready for Missouri; A look back at my fight

Hello everyone,

I'm looking forward to my speech in Missouri and I just solidified the plans for Ireland. Andrea will be joining me for this trip. We can't wait!

As far as P90X goes, I'm down to 177 pounds and am working out like a fiend. I worked out for 40 minutes this morning plus I ran in place for 17 minutes while doing my therapy. Then at lunch today, I swam 14 laps, ran a mile and rode the bike for 3 miles. At 38, an age I wasn't supposed to get to with cystic fibrosis, I feel like I'm in the best shape of my entire life. I enclosed a picture that I took this morning because I look back at the picture of me as a young kid (also enclosed) and I see that I always had that fight in me. It just took a while before I finally let it out. Back then, no one thought CF could stand for Cure Found; more likely people assumed it stood for Can't Fight. Now while there is no cure yet, all of us Can Fight and Will Fight!

Thanks to all of you who have bought a book. The sales have been really good. We just eclipsed over $10K in book sales. If you'd like a signed copy of "The Drive at 35," please click the link Thanks.

Wish for Wendy received a grant for 2012 as well for $25K so we were thrilled about that. We'll start the planning for 2012 in late April. It's a nice start to the year.

To those of you who are having health issues, keep fighting. To those of you who are doing well, don't let up. To those of you feel that life is unfair, there is someone out there doing far worse than you who believes the opposite. Stay strong.

Live your dreams and Love your life,