EJ and Deb at Comic-Con

With the upcoming World of Beer Tasting! CRF fundrasier next Sunday, October 4th, I wanted to send out a reminder on why we are involved in this. When I first came across EJ’s page which started a posting craze across the internet, I knew very little about CHM; in fact, I had never heard of it and pronouncing it was challenging. As I delved deeper into the disease, it was like peeling an onion. As I peeled back layers of families, one after the other, that this disease has attacked, my eyes soon began to sting as the tears surfaced. If there is one thing that I have found that all these CHMers have in common, it’s that they are inspiring.

Let’s start with the man that started the posting craze, EJ Scott. For those of you who do not know who EJ Scott is and what he has to do with True Blood, he is the boyfriend of Deborah Ann Woll. EJ’s entire family is affected by this disease. From his grandfather, who went blind in his 40’s, his brother and to his two adorable nephews, this disease has stolen so much from his family. Although it attacks mainly males, my heart goes out to his sister and mother. They may not be losing their sight but they have had life’s precious moments stolen from them as well. As women, we are born nurturers, and I can only imagine the feeling they must go through not being able to make their loved ones better.

In 2007 EJ started his “Bike Trip for the Cure.” The Bike trip started in May 2007 from San Francisco and ended 5 weeks later in Long Island NY. His brother-n-law Ali Ging, Ali’s brother Frank and EJ. Frank drove the RV, Ali rode the bike and EJ  documented it. For 5 weeks, 35 days in all. Approximately 3,800 miles averaging more than 100 miles a day, EJ documented the adventure:

“Ali bought an RV off of eBay. Fixed it up as best he could and off we went. Ali would bike from dawn til dusk most days. I think our longest day was 14 hours, I think. Basically, how it worked was Ali would start riding and we would go 10 miles ahead of him and wait for him with food or whatever he needed. Sometimes he would stop and rest and other times he would blow past us and we would drive another 10 miles.

It was the hardest thing I’ve ever been a part of. But also a great experience. The hardest part was being trapped in the back for 5 weeks. I was always hiding from the sun. The best part was meeting people and getting the word out there and we raised about $40,000. I don’t know if I would be able to do it again though.

We tried to get as much publicity as possible. We got some newspaper and local news coverage. And I put the word out for help. I knew Dave Koechner only a little bit from iO West. He’s a great improvisor/actor and performs there regularly. One night after he did a show he grabbed me in the bar and said he could get me on The Adam Corolla Show. It was one of the nicest things anyone’s done for me. It was a scary and surreal experience. At the time Danny Bonaduce was co-hosting. Everybody was really nice. I don’t know if any donations came from it. I don’t know if I did a good job on the air because of my nerves. After that show was over, he invited me on the Greg Fitzsimmons Sirius Satellite Show. So I was able to go on there too. Greg has done a couple of my benefit shows in LA. I did a radio show on the Loop here in Chicago and an indie station in LA and a college station on Long Island. So we got the word out there a little bit.”

Now EJ is thinking about getting Ali and his brother on Amazing Race, to see what happens. Ali would play for his boys and money for a cure. EJ think that would be a good story plus they are a couple of characters and their relationship is entertaining.

Once EJ gives us the word that the applications have been submitted to “CBS – The Amazing Race” we will start filling thier threads and email boxes. We want Ali Ging and Frank on the show! “Amazing Race for the Cure.”

Then, earlier this year EJ started “Dropping Calories for a Cure!” He set out to bring awareness to CHM by setting a goal to lose 60lbs and raise funds by asking for sponsors at a per pound amount. EJ has now lost  33lbs  and is up to $132.63/lb in sponsors. We are proud sponsors of EJ and thank him for all the inspiration he has given us. Thanks for the picture EJ and keep fighting, we will get there.

Eric, "The Artman" Hartman

The wonderfully gifted and extremely talented “Blind Artist With A Vision,” H. Eric, “The Artman” Hartman. You have to look at his art to appreciate his craft. This man is amazing; if you need inspiration, look no further.

www.art-man.com

Jeff (Superman) Benelli

Jeff (Superman) Benelli – After the Chicago Marathon in a couple weeks, this will be Jeff’s 4th marathon in 25 months that he has run to raise money for the CRF. What is even more inspirational is that he runs alone! The picture to the left is a postcard Jeff sends out along with these words:

“THE PATH TO END CHOROIDEREMIA (CHM) HAS BEEN ESTABLISHED. A CURE IS ONLY THREE TO FIVE YEARS AWAY AT AN ESTIMATED COST OF 3 MILLION.

I am attempting to run a three-hour marathon in Chicago on October 11th to raise funds for CHM research. This accomplishment, by an almost 44-year-old blind man, is an incredible feat! It would rank me as one of the top blind marthoners in the country. My hope is to inspire others to join me in the fight of my life… to cure CHM. The stakes have never been higher. CHM has taken my vision, and my 10-year-old nephew has also been diagnosed with this sight-taking disease. He will begin to lose his vision in as early as ten years. Thanks for your help.”

You can support Jeff on his “Run for the Cure” at www.CureCHM.org

These are amazing people and I have had the pleasure to befriend one of them. We talk so much on the phone he now has his on ring tone and when I hear “Kung Fu Fighting,” I know it’s my pal, Cory Mcdonald. Cory, has the WOW factor. He has an addictive personality and great sense of humor. He  is a multiple black belt and teaches self defense to the blind and he is blind himself. He works hard to get the word out about CHM but the hardest part of Cory’s life is taking phone calls from mothers that just found out their child was diagnosed and will go blind. He takes these calls with pride and usually cries with them as he tries hard to explain to a mother that it’s not their fault their child is going blind.

When I spoke with Cory about the clinical trials being only two years away, the excitement in his voice was enough to get anyone motivated. He was like an excited child the night before Christmas but the gift he awaits for never comes; because in the same breath he says, “It will probably be too late for me.” His excitement for other’s chances never falters.  I peeled back a fresh layer of onion and my eyes began to sting; I tried to keep my voice from breaking as my tears fell. How could this be possible? Why has this devastating disease gone unnoticed, shoved back into a corner like a dirty secret? I refuse to believe that it will be too late for Cory. There is power in numbers and all we need to do, is keep pushing.

True Blood fans have raised over $4,000.00 dollars and we still need your help. The important thing is that you donate – not where you donate. I know I have said this before but I can’t stress the importance of this, if you see a donate button, donate.  Time is running out for some and sight is such a precious gift to lose. Please don’t let the darkness win. Not when we can stop it.

Cory also finds humor in his situation and since I always try to use humor as well, here is my attempt at it.

I know it is so hard to grasp things when you are not living it. Just think about all the things you can’t do when your sight is effected and then eventually is consumed by blackness. I don’t know about you True Blood fans, but I would be pissed if someone just handed me a never seen before picture of Bill in the buff (no sock) and I could not see it.

True Blood fans tally and places to donate:

Bill’s Wiki’d Women $1,340.63 ~ Donate through us
Billsbabes  $1,309.20 ~ Donate through The Vault
The Viking Vixens $1,476.00 The Viking Vixens

Donate through the CRF

Please check out these incredible silent auction items for Sundays October 4th event. You can start placing your bid now, until Friday night. Check with Cory for a cut off time.

Replica of Anna Paquin’s Necklace

The Samuel Adams/Nike ExtremeSport GolfBag / limited edition Painitng H. Eric “The Artman” Hartman

Amstel Light Cruiser Bicycle /  Framed Autographed of Clay Buchholz Photo (Red Sox)

Heineken Mini Fridge / BOSTON CELTICS TICKETS

Autographed Boston Bruins Jersey by Hockey Hall of Famer Gerry Cheevers

Posted in Choroideremia, Deborah Ann Woll