The call

I know alot of people in this day and age do not have house phones anymore and to be honest I am surprised we still do. Today made me realize why indeed we still have ours. Let me set the mood here for you with a few background notes. 1) I rarely ever answer the house phone because 99.999999999% of the time it is someone who wants to sell me something or a senator wanting a vote. As a FYI senator, if you call me soliciting a vote, that's a strike and if you get three you get no vote. Choose your call count wisely. 2) It is easier to answer my cell phone because it is usually by my side, whereas the house phone is always on the opposite side of the house when it rings. 3) It’s easier to let it ring then waste my time answering it.

I'm sitting in the backroom watching airplane repo, oooooo yeaaaa love that show, when the house phone rings. If Mark wouldn't have been sitting in the front room I wouldn't have answered it, but I didn't want him getting mad that I didn't answer, so I got up and answered. That is when things got interesting. The guy on the other line promptly asks me what my name is before I even talk. Being the sly person I am I thought about telling him my name was shadow but I went with a lesser version of my name and told him I was Chris. He asked me if I knew a guy named Mark, and at that time I figured it was one of Marks friends so I started walking the phone into Mark. Yes I know a Mark he is my dad. This guy, better known as Don said, well does he go by "Mark Ranger Danger?" It was at this moment I paused and thought to myself, ummm are we talking about the same Mark right now? I do not recall any of these nicknames coming up in conversations with him in the last 15 years that he has been my step-dad.  I asked Don what is this Mark person’s last name that you are looking for? He promptly responded Pelphrey. My head was really spinning at this time and looking back I do not know why I didn't just give Mark the phone. It is like I was screening the call for him or something. After a few more minutes he let me know that the Mark he was looking for was a guy that used to be in the military. Yatzee, you got the wrong Mark, I know for sure Mark my step-dad was never in the military. I told Don, you have the wrong Mark Pelphrey and figured the conversation would end there. Wrongo!!!

At this time in the conversation, Don starts to tear up. In my mind I’m like I aint got time for this; I’m missing my favorite show. Am I BEING PUNKED!!!!! You got me whoever set me up. Then Don said dude Mark and I’s good friend just got killed in Afghanistan and I am trying to get ahold of Mark to let him know. Well that escalated quickly I thought. And this is why I do not answer the house phone. Well Don I said are you sure of how to spell Marks last name because there are a few different spellings. He had no clue other than it had a P in it. Well that narrows it down. He said do you know any other Mark Pelphrey’s? I was like nope but there are a lot of people in Columbus with the Pelphrey last name.

This difficult problem that I was having with Don was he was asking me for information the whole time about myself that I wasn't comfortable with giving out which made me even more skeptical. Like where do I live, what’s my last name, how old am I. Just very awkward questions that made me more and more skeptical and he seemed to get agitated when I gave him very vague answers like Ohio, Pelphrey, and college age.

Anyways he filled me in that he called #411 to get the operator to connect him with a Mark Pelphrey and they gave him our number. He filled me in a little more on himself telling me that he used to be a para something that worked behind enemy lines and that that is what his friend died doing. I started to trust this guy Don a little more and started feeling bad. He said well thanks for the help man I will quit bothering you and thanks for everything. I thought for a second and told Don to hold on a second. I said how about I go through the white pages and look and see if I could find another Mark Pelphrey in Columbus. Again since we live in the modern age we do not own a phone book so I turned to the internet and did a quick little search of a few sites and found a few Mark Pelphrey’s other than the one living here. He was so grateful that someone was helping him as he said that he just needed someone to talk to right now. As I am still looking and gathering “Mark Pelphrey numbers and evidence” he said man I pay my bills on time and help people in need but never has anyone done something like this for me, can I talk to your parents? Are your parents’ home?

Not wanting to get Mark involved as he was wondering why I was still on the phone with this guy anyways I just told Don my parents were at church. Then he proceeded to say I am going to hang up and call back but please do not answer the phone I want to leave a message for your parents. He hung up, called, left a message, and then promptly called back. Of the information I gather on various Mark Pelphrey’s in Columbus, there was one that was really drawing me to it for some reason. In total there were five other Mark Pelphrey’s, but this one kept standing out. I told Don, call this number 632-965-0654 and let me know what happens. (I changed the number for privacy reasons)

Unbeknownst to Don, I did some more digging just in case this was the wrong guy. I typed “Mark Pelphrey Columbus Ohio” into Google and the first thing that popped up was Nancy Pelphrey. I was like Google how do you get Nancy out of Mark you stupid computer.  I exited out and went to the white pages and typed in “Mark Pelphrey Columbus Ohio” and there again amongst the Mark Pelphrey’s pops up a Nancy Pelphrey. Before I exit out, there is another phone call on the house phone and sure enough its Don. He said Dude no one answered but I just remembered something; Mark is married to a Nancy. I'm like dude are you kidding me right now! When I get back to computer and click on Nancy’s name, the number that I gave him earlier is the same exact number under Nancy’s name.

I sent Don on his way after thanking him for getting me involved. He thanked me up and down then we split ways. I keep going back over the events that had occurred that day. Don kept asking me through our whole conversation why are you doing this for me, and to be honest I didn't know why. I still don’t, but I think a lot of it has to do because of Bob Goff. I follow him on Twitter and he is always saying, just love people. I knew Don needed a little helping hand so I sent some brotherly love his way. Will I ever speak to Don again or know how things turned out? I doubt it, but it is amazing what a little Love Does.

Why is it so hard?

Why is it so easy for me to make the decision to jump out of a moving airplane at 9000 feet or share the darkest parts of my life in front of a thousand people than it is to talk to one person about God! Isn't that crazy? I have a bucket list the size of Sandra's nice list. Yet never in the top ten or even on the bucket-list period has there ever been a goal called "getting closer to God". For me that is always on the to do list not the bucket list. One of those things you get back to eventually, not knowing if or when eventually will ever come. 

I made a decision a few weeks ago that I wanted to get more involved with students my age in the church somehow. These past six months, and more so in the last three months, I have been practically sprinting in the opposite direction of God. I have been pushing away from the church and second guessing whether God is really in my life or exists period. 

I got into a good conversation with a close friend of mine the other day about God, knowing he would be able to answer some of the questions I had about God, The same questions I was asked by an atheist but I didn't know the answer to. For me, Proclaiming that I am a Christian yet not knowing the Answers to basic questions about my faith makes me really wonder whether I am a Christian or not. It makes me wonder am I qualified to have that title. 

Knowing i needed answers, I started investigating what groups were available on campus at OSU. I remember my sister telling me a few years ago that Ohio State had a huge campus Crusade program so I decided to look into it. During summer I kept coming up with excuses for reason why I couldn't make it. The Grinch says it perfectly "Even if I wanted to go, my schedule wouldn't allow it! (flips his datebook open) 4:00: Wallow in self-pity. 4:30: Stare into the abyss. 5:00: Solve world hunger; tell no one! 5:30: Jazzercise. 6:30: Dinner with me; I can't cancel that again! 7:00: wrestle with my self-loathing... I'm booked! Of course, if I bump the loathing to 9:00, I'll probably still have time to lie in my bed, stare at the ceiling and slip slowly into madness. But what would I wear?!" I was always able to come up with that one excuse that prevented me from going. Normally when I do things it's nice to have a wing man so I'm not going in alone. That's another one of the excuses I use. Since no one else wants to go I guess it's not that important.

Buuuuuuuuut I took a big leap of faith tonight, I went to my first Campus Crusade meeting at Ohio State.... Aline. minus looking for a parking spot for 45 minutes It was so awesome. I wish I had taken pictures but I was to engulfed in The moment. 

I realized sitting amongst 700 fellow students that maybe we aren't meant to have all the answers. Even if God tried to explain it all to us it would be like trying to explaining advanced calculus to a snail. Ain't happenin. I came home from our meeting tonight and decided to make a few minor adjustments to that bucket list of mine. My bucket list now only reads:

1)    Pursue God 

because once i purse him, everything else (dreams included) will fall into place.

What a journey!

School started today and in class I couldn't really pay attention. For some reason my mind was in a far off place of what if's for the whole class period. Good thing we were only going over the syllabus, but it doesn't take away from the thoughts that kept swirling through my mind. For a little over two years now my life has been drastically different then the 19 years before them. In 2011 I was diagnosed with severe heart disease. The crazy part was that the only reason it was found was because my doctor wanted to see what this mysterious abnormality was on a stress test that was routine. After all this "thing" had been popping up on my stress tests for the 3 years prior to this one so why did he choose this time to finally investigate it further? It was questions like this I kept asking myself the whole day. Come to find out when he investigated it a little further he found out that I had four blockages in my heart, all over 75%.

I think back to that day more often then I probably should, not because it was like any other day, but because it should have never been found. You see after going to the NIH every year for 13 years the doctors started backing off on having me come up as often. That made since to me as nothing was ever different. In June of 2011 the doctor never called to arrange an appointment, so I just left it be. By mid July I kept telling myself I need to get in there, even if it is just for a day. So I called the doctor up and he asked if I could come the next week and sure enough I did. I told me when I got there that it wasn't his intentions for me to come in this year as he saw no need to do more tests. As we soon found out we were both glad I made the extra effort. It is all those little things that had to fall into place at the perfect time in order for me to be diagnosed anyway. Just mind blowing to me, then I step back and think of all the things that just have to go perfectly in order for them to have ever happened.

After being diagnosed I went on a crazy person spree. I kept telling myself I was going to find someone out there with this disease before I die, and at that point in time I felt like that time could be any minute. After many hours on the internet I finally gave up looking as there was no one to be found, I guess it was just to rare of a disease I kept telling myself. So what do I do? Get on Facebook. Thank God I did. As a last ditch fling I typed in familial hypercholesterolemia into the search bar of Facebook and voila! there was a group. Who knew something good could have come out of Facebook? Again it is one of those moments of where would I be now if I just decided to give up and just go to bed. In joining this group I got connected with now some of my best friends and who in turn connected me with two mega pharma companies. 

These two companies have opened the door to so many opportunities in my life. Never would I have had the chance to have my picture hang from the rafters of a multi-billion dollar companies headquarters...

Or be made into posters that were shipped all over the world for all to see...

Or be on the cover of Aegerion's 2012 financial report, speak at the capital for NORD, or be on a pamphlet about Juxtapid.

Believe it or not I still find it weird seeing my face on all this stuff. It is just....creepy to me. For the longest time I always kept this disease to myself and now all the sudden I cannot travel anywhere to speak about FH without there being a picture of me hanging somewhere. Though it can be a little weird sometimes I will have to say all the experiences I have had have been so amazing. I have had the awesome opportunity to speak in front of the FDA twice. I have been featured on a number of websites and news articles. For me it is all about getting the word about FH out there. It wouldn't matter if it was my name or any one of the other folks out there suffering from this disease, just to raise awareness and help save lives is why I have been doing what I have been doing. Believe me I hate public speaking and I wouldn't just do it for no reason. Part of the gig when traveling is me pretty much laying out my life on a silver platter for all to see and hear, The good and the bad, the ups and the downs, the happys and the sads. Below I have added a few URL's that I pulled off Google really quick. I am sure there are more floating out there somewhere but I just grabbed he first few. One is a YouTube video of my family and I talking about FH, others are about the Boston Marathon that was run on behalf of me and the disease, others are newspaper articles and magazine articles. 

Again the part that amazes me is how in the world I got from where I am today. We have all been to that point in our lives when we get bored and are just going through the motions. Well when God throws a wrench in your boring life, look at it as a sign to go do something awesome with your life. Don't just sit back and let the opportunity go by, make the most of it and make a difference in someone else life alone the way.

http://runningforrarediseases.org/2012/10/13/its-just-a-2/

http://runningforrarediseases.org/2012/04/02/running-for-fh/

http://goodmenproject.com/featured-content/the-healthy-mans-heart-disease/

http://www.businessweek.com/news/2012-10-08/toddlers-facing-heart-attacks-await-ruling-on-new-drugs

http://www.thefhfoundation.org/home/faces-of-fh/

http://online.wsj.com/article/SB10001424127887323926104578273900197322758.html

http://www.bloomberg.com/news/2012-10-08/toddlers-facing-heart-attacks-await-ruling-on-new-drugs.html

http://www.forbes.com/sites/matthewherper/2013/04/17/how-a-mourning-entrepreneur-and-a-dogged-doctor-saved-a-drug-for-a-rare-disease/

http://arlington.patch.com/groups/sports/p/arlington-s-daniel-leonard-running-for-rare-diseases

http://www.bizjournals.com/boston/print-edition/2012/10/26/two-local-firms-drugs-boost-hopes.html?page=all

http://www.youtube.com/watch?v=BNZpaBpfhLc&list=PL22622C62D43649DE

Skydiving

I want to apologize that I have taken a long break from posting. I find it easier to experience things rather then writing about them. This being said I am going to start trying to post on a more regular basis. 

In mid June I had the awesome opportunity to scratch another thing off my bucket list. I have made it a point to my mom and quiet a few doctors that I really wanted to go skydiving sometime. Everyone was totally against it, but I knew someday it was going to happen. It just made since to me. I love flying, actually I would do it as a career if I had the ability to. Ever since I was young flying to the NIH was like the best vacation trip ever. Going to the hospital was no fun but knowing that in order to get there I had to fly on a plane made the trip amazing. I didn't get to just fly in one plane, I got to return in another one as well. I would always count down the days and then not sleep the night before. Some people read this and think im crazy because more often then not people dread flying. The day finally came and I always made my mom get to the airport a few hours early because I was fascinated by watching planes taking off and land. There are times where I still pay the $2 fee to sit on the top parking garage of Port Columbus and just watch them take off and land, it is just so calming to me.

Once getting on the plane it was never a question that I would get the window seat. Again still to this day whenever I am booking a flight i ask if I can get the window seat. Something about watching the clouds and seeing the cities all lit up at night just amazes me still today. As a kid my face would be glued to the window and I would always wonder what it would be like to fall through a cloud. What a cloud feels like? The odds of me ever feeling a cloud were slim to none unless our plane was hurdling towards the ground and I was jumping out. Well lucky me I did jump out of a plane but it was voluntary and the plane was not hurdling towards the ground.

Let me paint the picture for ya. My cousins Josh and Courtney decided to tag alone and witness this jump I was about to take. As we are driving we realize the address we were given was the incorrect one as the one we were given has us turning into a guard rail. By popular vote we unanimously decided this was not the right place to turn so we kept driving. Once we went a few miles we figured we went to far so we pulled a U'y then figured we went to far the other way so we pulled another U'y. After Josh pulled up the correct address on our phone we finally made it. We pull up to this abandoned house that was filled with trash, at this point I was not longer as excited as I was while driving up. My jump time was at 1pm and the directions say arrive an hour early. Which we did. After taking a shuffle bus down a long gravel road that made me think this is where I was going to be a human sacrifice, we arrived to the jump site. I signed my life away multiple times and went through the brief jumping class. As one o'clock rolled around I was mentally prepared to jump. The 2 o'clock rolled around and I was still waiting to jump. Then 3pm, then 4 pm. I was at that point of debating whether to leave or not at this point. Finally after all the groupies had jumped and they refueled the plane with gas it was time. 

I got my jump suit on and said my goodbyes and boarded the plane. The instructor was a cool guy. He had jumped over 6000 times so I felt at ease letting him be my wing man. We start climbing and he asks if I want to pull the rip cord and im like YES, if we die i want it to be my fault not yours. 

We start clipping together at about 7000 feet and prepare to jump at 9000. It is FINALLY time to jump. We shuffle to the edge of the plane and pushes me out. I am dangling at this point. He counts to three and out we go.

It was cloudless all day so accomplishing my dream of always wanting to fall through a cloud seemed still non existent, but as we jump out, right below me was a cloud...A CLOUD!!!! 

Were falling and falling and at 5000 feet I pull the rip cord and ten minutes later we finally reach the ground. What a great experience it was. Falling through a cloud fees like falling through a mister, just in case anyone was curious. I asked the instructor on the ground why he had me dangling out of the plane before we jumped, and he said to make sure I was attached to him. Good thing I was I guess. 

There was a reason that I sat there for almost four hours waiting to jump. God was putting the cloud below me so I could feel it. You do not realize why things happen until you look back and sometimes you never know, but for me it all makes since. There is no doubt I will jump again, and there is no doubt that I will ever forget what it was like to finally fall through  cloud.

Love does stuff 2013

As I sat I class today I couldn't help but reflect on the previous week that was filled with so many firsts. The first time I spoke in a government building to senators, congress members, and my mom (Well my mom has heard me speak but not in a setting like that). The first time I flew somewhere without knowing anyone when I got to my destination. First time being in Washington state. First time i have ever paid for a flight. First time I have stayed in a quarter of a star hotel. No joke straight out of a cop tv show, I was waiting for gunshots. I had accepted the fact that nine chances out of ten everything would be gone from my room when I returned the first day, but amazingly I came home with everything I took :)

The first ever Love Does Stuff conference was on May 17 and 18. Love Does is a book written by Bob Goff about an ordinary man doing extraordinary things. I didn't know what to expect but I read the book and loved it so I said why not go.My hotel was three and a half miles away from the convention center and since I'm cheap I walked it instead of taking a cab. My legs made it clear that they weren't happy with that decision about a mile but It was nice to take in the city of Tacoma.
A little over an hour later I arrived and was nervous as all get out. People everywhere and I didn't know a one of them but that was okay because I knew we were all there for the same reason, to do love! I figured if I came this far I might as well get front row seats right? So I did. Both days in fact and to the David Crowder concert. 

I met some of the coolest people including but not limited to Bob Goff, Don Miller, Kid President, Jeff Bethke, Randy Siever, David Crowder etc.

I met people from all over the country. Some just wanted to meet Bob and be apart of his first conference, but others just wanted a new beginning. I think behind the scenes that's what I wanted too. A new start. A new beginning. Something to slow me down and make me realize that life isn't a race to the finish line and that it's not all about work, school, and traveling. For a few days I had the opportunity to put all that out of my head and focus on what God has planed for my life. 

It reminded me of youth group, but with over 1000 people. Just people being goofy and having fun and just soaking in Gods love. Bob Had everyone sign six or so tables out in the lobby.

He asked us to add bible quotes, love sayings, or something inviting peace.

He then cut them in half and is sending them the two opposing countries. His saying is "Don't get people to come to the table; make them bring the table..." Encouraging them the resolve the conflict between them. 

I could write a mini book on the people I met and the experiences I had while there. I left feeling like a different person. I want to land so much grace in people's lives that they feel like aircraft carriers because that's what love does!

NORD

After school ending I had a week off, but boy was it a busy week.  My mom and I had the opportunity to meet a young lady my age with HoFH. This is the first time I have ever met someone my age with the same disease. Yup, eighteen years later and finally one of my biggest dreams have come true. Amanda is 21 and goes to college in Pennsylvania. We had talk for quiet a few months as we both just started this new medication and we wanted to share tips and tricks with each other  We talked for a little while but most of the time I was busy thinking about the surprise that was about to happen. Our schedule was pretty well booked for the two days we were there but little did everyone I had a surprise. A surprise many months in the making and a surprise that no one saw coming.

I have been a part of The FH Foundation from its inception and I thought the best way to say thank you to the founder Katherine Wilemon for everything she has done for me was to give her a handmade quilt. The day before I was to fly out to Washington DC we had a conference call and we scheduled lunch with the free time that we had. We met her at her hotel a few miles away and in the lobby I pulled the quilt out of my backpack and handed it to her. After a few tears and some hugs I gave her surprise part two…. A poem written by me. Sometimes a simple thank you just won’t cut it.

After lunch with Katherine and the surprise I had the awesome privilege of speaking in front of hundreds of people in our nation’s capital and sharing with them my gratitude towards Aegerion Pharmacuticals and all they have done for the FH community. At the beginning of last year Aegerion’s first drug passed through the FDA and hit the market in the first quarter of this year. It was the first drug to come out for HoFH patients in a long time. They have given me the opportunity to share my story with people all over and help raise awareness for this disease that affects only 1/1000000 people. 

After barely eating anything because NORD decided duck was a good option, I went up on stage with a bite of a sub and a piece of bread in my stomach. I get so nervous before I speak in front of any group of people no matter how large or small. It doesn't matter that I have done it for almost two years now, every time I step on stage or sit down in front of a group of people and talk I physically become ill. No I don’t throw up on everyone as I think after a few time they would stop calling me back if that were the case, but I do start to sweat really bad and get very weak in the legs. It never makes it any better when people say beforehand “you’re going to do great.” Anyways after waiting for what seemed like eternity they called me up to the stage, (I had my speak on the TelePrompter just like the one the president uses.) and after a short thank you and brief history on myself I presented Craig Fraser, the president of Aegerion, with the award.  PHU… it was over. We got a few pictures and did a brief video interview and the night was done.

As I look back at the little time i have been with Aegerion, I can’t say enough about how much fun it has been to get out there and make a difference. I enjoy reflecting on the past ventures I have taken and look forward to the many ahead