Tuesday, March 1, 2011

Raising Real Awareness

There are certain words and phrases that didn't exist in their current connotations back when TigerBlog was a kid.

Nobody ever used to say "signage," for instance, when "signs" worked fine.

Above them all, though, TigerBlog can't stand the term "raising awareness" as it's normally applied; that is, to calling attention to diseases or conditions that everybody already is aware are awful.

Too often to TigerBlog, events that are designed to "raise awareness" of those diseases end up being more a way for the people who are involved to give the very public impression that they are doing something critical to help the cause. In reality, quite often those people are in position to do much more in a meaningful - and private - way.

Yes, it's nice that the NFL has everyone wear pink, but couldn't the money spent on all of that (times 1,000, for that matter) go directly to the people who are trying to find a cure?

Still, it's hard to go out and raise real money, the kind that makes a real difference. It's easy to get the public credit for "raising awareness."

This isn't meant as a criticism of everyone and every event. Many of the smaller events that college athletic teams and local community organizations undertake simply don't have the ability to raise those kinds of sums of money for donations.

And in many of those cases, there is legitimate value in the relationships created and the sense of service. But raising awareness for cancer or autism or heart disease? Everyone already knows all about them.

Then there is the whole concept of the rare disease, which is an entirely different situation.

Rare diseases are defined as those that affect 200,000 or fewer people, and there are 7,000 of these diseases, most of which very few people know about.

TigerBlog, for instance, has learned in the last few years about two of those rare diseases.

Ataxia Telangiectasia is a disease that affects about three out of every one million children in this country, which fortunately makes it very rare indeed. The disease, which TB doesn't quite understand, attacks the muscular development of young children, often being mistaken for diseases like cerebral palsey, and then ultimately breaks down the immune system. The mortality rate is nearly 100%, and life expectancy beyond 20 is rare.

Unfortunately, one of the three in a million kids lives about four miles from Jadwin Gym. Derek DiGregorio, whose father Steve was an assistant football coach here and was the freshman coach when current head coach Bob Surace played, is a 13-year-old who has the disease.

Derek's family has been joined by some others who aren't quite ready to give in to Ataxia Telangiectasia without a fight, including former Princeton basketball player and coach and current Mercer County Community College coach Howard Levy, football associate head coach Steve Verbit and Jess Deutsch, who works in the Office of the Dean of the College here at Princeton.

Together, and with others, these people have created Derek's Dreams, an organization that is designed to raise awareness - real awareness - to a disease that almost nobody has ever heard of.

Last year, this group had a fundraiser for the cause, and the event couldn't have been more successful, with some big names in attendance and big memorabilia/sports packages auctioned off.

This year's event will be held April 6 in North Jersey. Much more information is available at dereksdreams.com.

Another rare disease that is now permanently familiar to TB and to the Princeton football and athletic family is Aplastic Anemia, the disease that afflicted Jordan Culbreath nearly two years ago.

Culbreath, coming of a 1,200-yard junior year for the Tigers, struggled through training camp in 2009 with fatigue and other health issues. It wasn't until he had an ankle injury early in the season, though, that the real cause of his problems was discovered - a disease called Aplastic Anemia.

Like those in Derek DiGregorio's camp, Culbreath and his family didn't give in to his disease either. Instead, he fought it head on as well, and the results have been spectacular.

Against all odds, Culbreath was able to regain his health to the point of being able to play college football again this past fall, and he led the team in rushing again.

Beyond that, his teammates and the Princeton Department of Athletics organized several outreach efforts, including a bone marrow drive.

Most recently, Culbreath won an award that he would never have wanted to, the Uplifting Athletes Rare Disease Champion award.

It's a tribute to the man himself that he was able to return to Princeton and the field after coming so perilously close to losing his life in the first place.

Jordan Culbreath and Derek DiGregorio are quite different people in different situations, but they are front and center in the fight against two horrible diseases.

These diseases aren't mainstream ones, and it's going to take a lot more than pink shoelaces to cure them.

Still, these two young people inspire everyone who hears their stories and comes in contact to them.

That's a great place to start.


KerriAnne said...

Great post, both of my young children have Ataxia Telangiectasia. You've gained a Princeton fan here.

Sandra Walter-Steinberg said...

Bravo Jordan, and Thanks to Uplifting Athletes/Princeton for your support of the Aplastic Anemia & MDS International Foundation's work to help patients and families fighting aplastic anemia and PNH while we pursue a cure. We invite everyone to learn more, and to support our work, at www.AAMDS.org THanks.