I’m a sucker for sick kids, it just seems so unfair that a child should have to suffer through something that I know would crush me if I had to go through it. At the beginning of last year I came across Courtney Roth’s blog, EBing A Mommy, about her son Tripp’s battle with junctional Epidermolysis bullosa. Epidermolysis bullosa is a devastating skin disease that causes the skin to blister – inside and out – at the slightest touch or friction, and junctional EB is the worst of its kind. Tripp had just turned two when I started reading, an amazing feat as doctors didn’t suspect he’d make it past the age of 1. Courtney and Tripp’s story was heart wrenching and uplifting, they were amazing and strong in the face of the greatest adversity.

Tripp passed away on Saturday, January 14^th. I bawled when reading Courtney’s blog entry. This little boy I had never met had a special place in my heart, in thousands of hearts, he was just an amazing little guy.

S. 606/HR 3059, the Creating Hope Act, is set to help children with rare diseases. Here is the official summary:

9/23/2011–Introduced.Creating Hope Act of 2011 – Amends the Federal Food, Drug, and Cosmetic Act to
revise the priority review voucher program for tropical diseases to:

1. include rare pediatric diseases;
2. allow unlimited transfers of vouchers under the program;
3. require a sponsor intending to use a voucher to notify the Secretary of Health and Human Services (HHS) at least 90 days (currently, 365 days) before submission of the application.

Revises provisions regarding the priority review user fee, including to make it payable upon notification of the Secretary of intent to use the voucher. Authorizes the Secretary, upon request of the manufacturer or sponsor of a new drug, to designate that a new drug is:

1. for a rare pediatric disease;
2. an eligible treatment.

Requires the Secretary to deem a rare pediatric disease product application to be incomplete if it does not contain a description of the sponsor’s plan to market the product in the United States. Authorizes the Secretary to refuse to issue a priority review voucher upon the approval of a rare pediatric disease application if the Secretary finds that the sponsor lacks a good faith intention to market the product in the United States. Directs the Secretary to issue a guidance document setting forth the evidentiary support necessary to demonstrate such a good faith intention. Requires sponsors of applications under the priority review voucher program to report to the Secretary within five years after the approval of the application on the demand and distribution of the product within the United States.

Simply put, this bill will help to encourage companies to put time and money into researching rare diseases that normally don’t receive such care. It’s a pretty big deal for kids like Tripp who suffer from diseases that most of us know nothing about¹.

You can follow this link and put in your contact information to automatically look up your local representatives and send them an email asking them to support the Creating Hope Act. I was able to quickly and easily send a message to Senator Jim Webb (D-VA), Senator Mike Warner (D-VA), and Representative Morgan Griffith (R-VA-09). I’m asking everyone I know to do the same. Speak out for those who can’t.

1. I had never even heard of EB before stumbling onto Courtney’s blog. [↩]

Ramblings

So since my last post Claire turned two on the 7^th and Logan turned one on the 16^th. Craziness, y’all!

For Claire’s birthday we went to Charlottesville to hang out with Andrew’s family. On the way up there we stopped at the VDOT Workers’ Memorial off 64 to stretch our legs.

Babies

Hey Cori what are you doing with your life? Oh you know, the usual.

I’m on a horse.

Games

Saturday was New Year’s Eve and Andrew and the kids and I celebrated it with style. Sort of. I kind of forgot about New Year’s even until about 7 o’clock on Saturday. The kids and I ran out to the grocery store and picked up pizza, shrimp and mini eclairs from the freezer section. I also picked up a $5 bottle of peach champagne for Andrew and I. The classiness doesn’t stop there, folks. When Andrew and I moved into this place last March we set the box of champagne flutes, wine glasses and pilsner glasses aside to be unpacked later. The box has never been seen since, and we can’t just go get more because Andrew is absolutely sure the box is here somewhere and he insists he’s going to find it so don’t bother to get more they’re here. Somewhere. So Andrew and I toasted 2012 with $5 peach champagne in drinking glasses¹. It’s called style, we has it.

When I say Andrew and I toasted 2012 I actually mean I toasted 11:45 and passed out and tried to physically assault Andrew when he woke me up for the ball drop and maybe, possibly a New Year’s kiss. Claire and Logan were super stoked to stay up past their bed time. Sort of. Logan made it about an hour after his bedtime and was out cold by 9pm. Claire lasted a bit longer but was down by 10. Bunch of lightweights, at least I made it past 11, and with 3 glasses² of booze to boot. I bet they wouldn’t have made it past 8:30 if they had started drinking when Andrew and I did.

I’m not that big on resolutions, but I like how refreshing and rejuvenating a new year can be. In 2012 I hope to:

• Drink more water, drink less Dr. Pepper
• Get more organized, especially my desk
• Create more stuff, share it on this blog

What are some of your intentions for 2012?

1. Even more amusing is that we have had champagne, beer and wine in this house many times since moving here. With guests. [↩]
2. Drinking glasses are much larger than champagne flutes, learn from my mistakes. [↩]

Holidays