We learned today that the story Comcast did and appeared on their show Net Impact has been nominated for an Emmy. we are very proud of htis and so happy for Bad Nau, who crafted the story and was able to telll of our message….Thanks Brad and good luck in September at the awards show!
A true sign of summer for us around here is the arrival of the Philly Tri. I can remember when this event had about 500 people, and people were using their kids bike helmets and ones that were made of foam, now thing have changed. Over 5,000 people and two days of racing in great weather with a stacked pro field. The people that do this do a first class job, and it really has become one of the best races in the US in a major city. The roads are all closed, and pretty smooth. Flat run and yes, ask anyone, the River isn’t that bad!
Tom didn’t race due to his continuing recovery from surgery, but plenty of Racing To Register athletes did.
Bob Pugh, 3rd in age group, top 50 finish overall, Matt Noone-2nd in Olympic Aquabike overall, Josh Sloan-3rd in overall Sprint Aquabike. Many other team members had personal best times on a fast course.
Probably more critically, we registered over 100 people for the National Donor Registry, and collected some much needed donations. Thanks Phila Insurance!! and the Philly Tri for the help on the booth, for the second year we have had tremendous success at this event in creating awareness and educating people on the fact that we must increase the donor base.
We will do a more formal announce soon, but we are very pleased that the expanding roster of athletes flying the RTR logo is expanding with the addition of Seun Adebiyi. Seun is originally from Nigeria but graduated high school in the US and started college….at 14! He then went on to graduate Summa Cume Laude from U of Pittsburgh, at 14 he placed 4th in the US in his age group and beat the Nigerian 200 meter National record, he missed qualifiny for the 2004 Olympic trials by a mere tenth of a second.
Seun was also a finalist for a Rhodes scholarship. He is a graduate of the Yale Law School where he was also on the law review.
Seun was diagnosed for Lymphoblastic Leukemia and stem cell Leukemia,a rare combo and deadly. After undergoing massive chmo and full body radiation he underwent an umbilical cord transplant, approx 18 months ago. With the help of DKMS Americas Seun held the first ever marrow registry drive in Nigeria, and recruited 300 people in one afternoon. Now Seun has set his goals on qualifying for the Nigerian Olympic Skeleton team, a task he can accomplish and is training full time for.
Seun embodies what Team RTR is all about: inspiring others through sport to make a difference and join the marrow registry.
Tom and Seun will be setting speaking dates to tell their combined story of RTR, its mission, and the true example Seun is of this.
We really need to post a bit since we haven’t, but we have been so busy and so forth. The good news is that the dog has only eaten two dinners of ours and 3 news papers, and no (man I even hate to jinx myself) visits to the doctors office. So Brinkley isn’t a good excuse. But RTR has seen some good progress and we even had our first donor match. That’s very exciting as we close in on just over 1,000 people registered so far. If you plan to donate to us, we can always use it, and we should have 501c3 status by the end of 2011 we hope.
The link for our first Annual Golf Event is open and CLICK HERE to play or buy a tee sign that you can customize with a message…the event will raise money with proceeds to pay for donor testing kits as well as to go to financially needy families of kids who have had or will have stem/marrow transplants.
Despite having a nasty crash last week (dont tell the doctors), Pam is back up on the bike and riding, albeit indoors, and still plans to compete next weekend in the Phila Triathlon. A true inspiration to all.
We will also be hosting a marrow donor sign-up at the Phila Tri expo 6/24/-6/25. So come by!
We are really happy that our first match has happened. We’ve been able to register over 1,000 people and someone has matched. Think about it- its’ incredible to know that someone will have a chance at survival because a person was willing to join the donor base.
Here is a really was able to meer great story about a young woman who was able to meet her donor!
http://www.courierpress.com/news/2011/may/28/no-headline—28bonemarrow/
So pleased to report that today we learned that someone who joined the registry at one of our drives actually matched with a patient in need. We do not know if ultimately this will result in a transplant as some more testing is needed, and the donor needs to agree, but we are hopeful. Its an incredible feeling from our side to know that we are making some type of progress and offering some type of hope to someone!
Keep up the good work everyone!
This will be a quick post since I need to once again clean up the hurricane that was my closet. Seems that the worst Golden Retriever ever has now, amazingly enough, figured out a way to move suitcases that barricade the entrance to my closet, so that she can not get in. It’s also a slider door which makes it more amazing! These are not small suitcases either…anyone that reads this blog knows that I sometimes open with things about Brinkley, more because I want a historical record of how insane, but loving, she is!
On to the cause at hand. This week is the Broad Street Run in Philly. We have a number of people who will be wearing the Racing To Register tech shirts so thanks! What is even more exciting is that Pam will be doing the entire 10 mile race. This is truly inspiring. Pam’s hemoglobin count is near 9, so basically it is like running in 12,000 ft of altitude all the time. Imagine climbing to the top of a mountain and then running 10 miles…that’s what it is like. So for all of you who suffer from blood cancer etc….or are thinking you can’t make it through, think of her and that she will never quit, never 
give up, even in the face of this blood cancer….it’s what we are all about at RTR! Control the situation don’t let it control you! Only think of the “right now”, don’t look back, don’t look forward. Many times when I race half iron or iron distance, I actually will not look ahead too much…maybe technically not the best, but if I do I future trip. I only look 15 feet ahead, I focus on the right here, right now!
Thanks also to Franklin and Marshall College for letting us come and hold a drive where 122 people signed up…the photo here is of Pam and Rob Burnnett of the FM Cylcing Team. Also thanks to Jones Lang LaSalle for holding several drvies (Chicago, DC, Denver, Phila) where over 200 people registered. Awesome.
So racing season is here. We are planning to have some inner city registration drives, I will post dates. We are setting them up now.
These are exciting times for RTR, but we need every one’s help. So far we have traveled over 25,000 miles to events, speaking etc..registered over 1,000 people, competed in over 50 events, but man, we are only just beginning in this. …
The new Racing To Register kits are being ordered if you are interested in a kit or cycling shirt let us know by email racingtoregister@gmail.com
I’d spend more time on this but another night means the dog broke into my closet and destroyed whatever she hasn’t over the last five years.
I know, we got some emails from people wondering if we feel into a pool, where the posts been…well who new we had any fans ? Who new! See Mom, that English class paid off. Anyway, we’ve been slammed, family things, PT for the arm, Pam enjoying retirement, and getting RTR off the ground and registered as an official 501(c)(3), / pending…so we have some more posts coming, but for now note these new Marrow Registry Drives. Also check out our Canada site www.racingtoregister.ca
April 21, 2011: F and M College, Lancaster PA, Steinman Center, Booth Feris Room, 12-6pm
April 24th, 2011: Temple Brith Achim, 10am-2pm, King Of Prussia, Pa
Hope you can come, If you need a testing kit one can be supplied for free by ordering one on www.getswabbed.org
Below is an email I got from my friend Glenn, who runs Racing to Register Canada (www.racingtoregister.ca) Glenn is also fighting MDS.
From Glenn :
Check out link and my update I sent last night to friends and family;
http://www.mississauga.com/community/article/971769–streetsville-shows-will-of-iron
FLABERGASTED!
I the only word I can describe what is going on the past couple of weeks.
I would rather have gotten this much publicity for scoring a hat trick in a playoff game.
In point form:
Tonight at the Kinsmen meeting I talked about how God has a purpose for me, I believe that HE is using my disease to pull community together, I believe I am going to be an ambassador for the 900 Canadians who are also waiting for a Stem Cell Transplant. I believe that HE is blessing me with good health now so that I can accomplish this calling. I also believe that I need help in this calling, please spread the word on facebook, by phone, email, word of mouth ect… Please pray for me, that I don’t “overdoit” That I stay healthy, that I continue to have an easy time with Chemo treatments, that funding continues for these treatments. Continue to Pray for Michelle, Ryan, Collette and Sierra, who also live it every day.
If you want to hold a swab clinic at your work, let me know, if you have a corporate wellness person, ask them if its possible.
OK, lets start with the part people seem to really love to hear about. No not Charlie Sheen (though man is that the greatest stuff to watch!?) I am referring to Brinkley mania: This weeks edition of How “My Dog Keeps Me Awake, But Only During the Work Week”, involves Brinkley going back to an oldy but a goody: the perpetual gagging. It seems that it’s a big circle with Brinkley, you see she will constantly lick her paws, because she is compulsive (that another 2-3 blogs), and then develops “hair balls”. I love her, but she still hasn’t figured out that constant licking makes her digest hair, which after about 2 months each time, makes her then gag as she is trying to get it up. But she can’t, so she walks around, all the time, coughing like someone who spent a summer in the Iraqi desert inhaling sand. This goes on for about 5 days, all day and night, and then eventually she gets exhausted, throws it up (always on the white carpet) comes over and is very proud, and then its over….but I’m exhausted, making any good training for about a week virtually impossible unless I have a central line hooked into me flooded by Red Bull. Good thing I am not training due to the shoulder/neck.
Now that we got that underway, let me take a few lines to comment on something. I do appreciate when folks ask how Pam and I are, but there are some pretty funny answers Id love to give sometimes…
Dont get me wrong, we appreciate when people ask questions, it shows interest and allows us to educate, but some of the questions are pretty funny….
Hey, you need to always, always be able to somehow, laugh at the situation. When you can’t laugh anymore you can’t shake off the fear and you let the mind take over. Remember this, the “mind” is only a tiny little round thing in your head, the body and spirit are much much larger. Remember this, and you will be controlling the situation not letting the situation control you.
