‘Hope’ is for the children

UPDATE: I have to admit that at first I didn’t think this was going to work, but after weeks of tweeting, texting and voting, the Hannah’s Hope Fund is an unofficial finalist for a Pepsi Grant. The results will be confirmed in a couple of weeks. The last few hours before midnight were chaotic, with the results flip-flopping back and forth, and when the voting closed, it looked as though we might have lost. But when the sun came up and the unofficial tallies posted, Hannah’s Hope was in second place, just past the line. (First and second place finishers receive $250,000 each.) My thanks and gratitude go out to everyone who helped the Second Front help Hannah’s Hope. Your efforts made the difference.

WARNING: The following post may contain political cliches and trite phrases known in the State of Alabama to be hazardous to your political health.

Phrases such as …

I’m not asking for your money, just your vote.

I know he’s my brother, but that’s not why I’m doing this.

And of course …

It’s for the children.

That last one, when I hear it, always has me reaching for my wallet — not to make a donation, but to make sure that it’s still there.

But this time, it’s true. I swear. Trust me.

I’m taking a point of personal privilege to write about what my brother’s doing and to ask you for your help.

My bro and Ethan, a GAN patient.

Technically speaking, Steven Gray isn’t my brother. He’s my stepbrother. But he and I, along with my other stepbrother Chris, grew up together since I was 13 and we’re close enough that we throw around the B-word without worrying about the prefix.

We grew up and went to college. He went to Auburn and Vanderbilt, where he studied molecular biology. I went to BSC, where I learned to be a muckraking hack. We see each other on holidays.

Despite being the youngest, Steven is probably the most grown-up of the three of us. He has a wife, a house, and two children — sweet and sassy Aubrey and her little brother, Jamie, who before the age of three has tapped into unseen and possibly trans-dimensional sources of energy that allow him to run everywhere he goes.

Since becoming Dr. Steven Gray and moving into the real world, Steven has been the most industrious, too. For the last several years he has been learning to manipulate viruses to one day correct fatal degenerative genetic disorders in people, especially children. Meanwhile, I learned how to use Twitter.

Which brings us both to where we are now.

For the last few weeks on Facebook and Twitter, I’ve been helping Steven and his friends promote a cause, and right now that cause could use your help. Don’t worry. They don’t need your money, just your vote. But your vote could help them secure money they need.

Steve and his lab have been researching how to use viruses to cure genetic diseases. One of those diseases is Giant Axonal Neuropathy, known as GAN for short. A rare genetic disorder, GAN causes the central nervous system to deteriorate slowly and is ultimately fatal. Symptoms usually begin when a child is only a few years old. At first they lose muscle tone, reflexes and coordination. Eventually, they become paralyzed and unable to swallow or breathe. Most GAN victims die before turning 20.

Hannah Sames when she could play T-ball.

About two years ago, doctors diagnosed Hannah Sames, then a 3-year-old from New York, with GAN. Her parents were told that the disease was essentially a death sentence. But rather than giving up, the Sameses created Hannah’s Hope, a non-profit dedicated to finding a cure.

That’s where Steven and his team come in.

Much of the research toward curing GAN and other similar diseases is already done, and I’ll explain it to the best of my liberal arts major ability. The lab will create a virus to change GAN patients’ genetic code. This sounds a little scary, but altering DNA is something all viruses already do. But instead of programing cells to create new viruses, as a natural virus does to replicate itself and make you sick, these new manmade viruses will replace the GAN-causing DNA with the DNA of an unafflicted person.

If it works, it will essentially erase the fatal defect from the patients’ genetic code. And if it works for GAN, the same research would be applicable to other genetic diseases also, especially those that attack the central nervous system, such as Lou Gehrig’s Disease.

Most of the laboratory work is complete. Two things are left to be done. The most significant is human trials. The Sameses have already raised the money for those. But before that can happen, the FDA requires expensive toxicology tests.

But remember, it’s not your money they need right now. Just your vote.

Hannah’s Hope has applied for a Pepsi Refresh Grant. Each month, Pepsi puts all these applicants on the Pepsi Refresh website, where people can vote on them. At the end of the month, Pepsi awards grants to the winners. If Hannah’s Hope finishes in first or second place, they will receive $250,000 for those toxicology tests.

This is where you and I come in.

There are three ways to vote. The first two, you can do by following this link. First, you must register. This takes only a minute or two. No one is going to spam you or anything, so you don’t have to worry about that. If you are on Facebook, you can register (again) using Facebook Connect.

It’s not my normal practice to encourage voting twice, but if you register by hand to vote, you can then logout and do it all over again using the Facebook option.

Then you can vote a third time by texting 101885 to 73774. This doesn’t cost you anything but the normal texting fees.

Once you’ve voted, you can vote all over again each day.

Finally, you can share Hannah’s Hope’s Pepsi page through Facebook and Twitter using this short link.

http://pep.si/cZwVJi

Obviously, I have a favorite cause, but it’s not the only one on the Pepsi Refresh site. Pepsi allows you to vote for 10 causes each day and there are different categories in which to vote. Feel free to vote for whichever ones you like best.

A few weeks ago, Steven and his wife Christy began pushing this on Facebook. Since then, lots of my Facebook friends and others I don’t know have shared it all over the country. Even our hometown paper, The Thomasville Times, got in the act, throwing my brother a “Thomasville Native” headline. (‘Thomasville Native” headlines come in two flavors. The good kind: “Thomasville native developing cure for childhood disease.” And the bad kind: “Thomasville native mauled by bear while drunk at zoo.”)

When I first voted and shared this with my friends, Hannah’s Hope was at about 350th place. Today it’s in third place and there’s three days left to move it the rest of the way.

It’s time to bring this thing in for a landing.

I’ve been a little squeamish on whether to write about this here — in what is essentially an act of journalistic nepotism. But what the hell. It’s my blog and my rules to make, and we all need a good karmic win every now and then. Besides …

I know he’s my brother, but that’s not why I’m doing this.

I’m not asking for your money, just your vote.

It’s for the children.